January and I don't get along. I don't even try anymore. I have come to grips that we have a hate hate relationship. What is there good about January? Not a darn thing as I see it. New beginnings. Whatever. New years resolutions. Stupid. Inversions. Hate. Air you can slice with a knife. Deadly. Skiing. I haven't been in years. But, that was one good thing about Jan. back in the day. I had a seasons pass every year and skied every Saturday. Fun. Actually, awesome.
But this January seems to be worse than ever. We just got the Christmas tree down last night. Man, isn't it weird how something you love becomes a "raspberry seed in your wisdom tooth"? SO annoying. I have been spending most of my days in bed, or at least on the couch. I have literally felt awful. It seems I can't take 10 steps without my muscles, or what I left of them, killing me. And so out of breath. I feel my body deteriorating in a hurry. I couldn't even make it to one of Curtis' b ball games last week. That never happens. I pray for patience. I've decided that isn't a good idea anymore. You know, the old, be careful what you pray for. Maybe I'll pray to start being grateful for January. I don't think so. i don't even want to be grateful to such a horrible excuse for a month. Our relationship is OVER! Unless, or course, I start skiing again. Then I'll think about it. But not until I get an apology.
Let's just blame my feeling so horrible on January. January doesn't even deserve to be capitalized anymore.
So, bring on Feb. and Valentines Day. Let's skip january altogether from now on. Yeah, that's what I'm going to do.
No spell check. january is NOT capitalized! even at the beginning of a sentence.
Saturday, January 16, 2010
Monday, December 7, 2009
A New Normal
I read an article on stigma. It told of a woman who was diagnosed with rheumatoid arthritis. She gave insight into her new world. She told of how she attended the graduation of her grand daughter. It was held in a stadium. Upon getting in the stadium, she looked at the stairs wondering how she was going to make it up to her seat. And then the seat. How was she going to sit on a concrete, backless bench for 2+ hours. Then she would have to walk back down all the stairs one at a time, one stair-two feet, one stair-two feet, and so on and so on with bones that had stiffened so badly from sitting still that long. Her new normal, so abnormal, but her new normal none the less.
The article then told of stigma. There is a societal norm we all try to impossibly obtain. The perfect spouse and family, the perfect home that is always well kept, the perfect job, etc. etc. and of course the perfectly flawless body. And a body that is vital and healthy.
In Greece hundreds of years ago, stigma meant flawed. Anyone with physical abnormalities had their problem either burned or cut into their bodies so that everyone could see and know they were weird, flawed, different, damaged goods. Then the rest of "normal"society would know to stay away. They were persecuted and sent to live away in their own communities. I can't imagine the shame and sorrow they and their families must have felt. I would have been sent to one of those camps, though I know my family would have thrown spiked balls, rocks, or even themselves, at those trying to take me away. Or they would have come with me.
Damaged goods.. hum.. There was a man in my neighborhood growing up. He had MS. He was a brilliant man. Every Sunday I would say hello to him as he sat slumped over in his wheelchair. He couldn't talk but he would turn his ever sparkling eyes up as best he good, and with a smile, he would nod back acknowledging my presence. His wife would push him everywhere they went. It was quite the process as she would have to get his wheelchair in and out of the car, then into where ever they were going. The Durhams also had a daughter that passed away from scleroderma, a daughter who had a massive stroke in the prime of her life, early 20's, and a son-in-law who committed suicide.
Ron's bishop growing up has had to bury 4 of their children. Another dear friend of my parents, Don Stagg, was blind, had MS and later on, got cancer. This man completed law school after he went blind. His wife would read all his text books to him so I say, she became a lawyer as well. The ironic thing is that Janet, his wife, passed away before her husband, from a very fast cancer. A mother of a dear friend, who was so energetic and vital was diagnosed with Alzheimer's when Susie was first married. Susie's children never knew their grandma when she was so healthy. Susie never had a mom that could help with her children, or call and ask for advice, all those things mother's do.
There are hundreds of stories that we all have of people we looked at a little differently, either out of sorrow, empathy, pity, or whatever. And now I am one of them. I probably have been all along as many of the Nelson's trials have been so visible.
It has taken me a lot longer to put up Christmas decorations. I have needed much more help. As I was trying to get some boxes down, I called Ron to help me. My wrists wouldn't let me hold on as I needed to. I expressed my frustration and sadness to Ron saying how I hated that I am more dependent than ever now, that I didn't like this part of my life. He replied that this is my life, my new normal. I cried that night in the solitude of my room realizing that he was right.
Yesterday in church, I was asked if my calling as Primary chorister was too much for me to handle. There have been a few times where I have gotten sick and dizzy while I was standing and singing. I would have to stop waving my arm, lean on the table. I don't know if it is too much, but what I do know, is that it is one of my all time favorite things to do in the church. A place I can really make a difference. I LOVE it! But now that I am damaged, people wonder, and I guess I do too. I don't want to be put out to pasture. I NEED to be involved, actively engaged.
All of the people above are hero's to me, examples of perseverance and faithfulness, come what may. I have no doubt that all are, or will be, those in the after life, whom we will look at in awe and wonder, and wish that we could have had the earthly experiences they had to have received the blessings they have received.
And aren't we all damaged goods after all? I say we are. What do you have branded on your body? Some of those stigmas are more visible than others. We are all in this together. I feel the power and strength that comes through prayer. Prayer from friends, but mostly family. I feel the love of a mother and father who have given and sacrificed all they have for me, and all their children. I feel the love and concern that comes from dedicated, loving children. And a spouse who must go through those alone times as well, wondering what the future has in store.
But mostly I feel the love from a Father and Son, whose birth we celebrate. It is my prayer that at this Christmas time I may focus on all I have been blessed with, all I can do, my new normal.
The article then told of stigma. There is a societal norm we all try to impossibly obtain. The perfect spouse and family, the perfect home that is always well kept, the perfect job, etc. etc. and of course the perfectly flawless body. And a body that is vital and healthy.
In Greece hundreds of years ago, stigma meant flawed. Anyone with physical abnormalities had their problem either burned or cut into their bodies so that everyone could see and know they were weird, flawed, different, damaged goods. Then the rest of "normal"society would know to stay away. They were persecuted and sent to live away in their own communities. I can't imagine the shame and sorrow they and their families must have felt. I would have been sent to one of those camps, though I know my family would have thrown spiked balls, rocks, or even themselves, at those trying to take me away. Or they would have come with me.
Damaged goods.. hum.. There was a man in my neighborhood growing up. He had MS. He was a brilliant man. Every Sunday I would say hello to him as he sat slumped over in his wheelchair. He couldn't talk but he would turn his ever sparkling eyes up as best he good, and with a smile, he would nod back acknowledging my presence. His wife would push him everywhere they went. It was quite the process as she would have to get his wheelchair in and out of the car, then into where ever they were going. The Durhams also had a daughter that passed away from scleroderma, a daughter who had a massive stroke in the prime of her life, early 20's, and a son-in-law who committed suicide.
Ron's bishop growing up has had to bury 4 of their children. Another dear friend of my parents, Don Stagg, was blind, had MS and later on, got cancer. This man completed law school after he went blind. His wife would read all his text books to him so I say, she became a lawyer as well. The ironic thing is that Janet, his wife, passed away before her husband, from a very fast cancer. A mother of a dear friend, who was so energetic and vital was diagnosed with Alzheimer's when Susie was first married. Susie's children never knew their grandma when she was so healthy. Susie never had a mom that could help with her children, or call and ask for advice, all those things mother's do.
There are hundreds of stories that we all have of people we looked at a little differently, either out of sorrow, empathy, pity, or whatever. And now I am one of them. I probably have been all along as many of the Nelson's trials have been so visible.
It has taken me a lot longer to put up Christmas decorations. I have needed much more help. As I was trying to get some boxes down, I called Ron to help me. My wrists wouldn't let me hold on as I needed to. I expressed my frustration and sadness to Ron saying how I hated that I am more dependent than ever now, that I didn't like this part of my life. He replied that this is my life, my new normal. I cried that night in the solitude of my room realizing that he was right.
Yesterday in church, I was asked if my calling as Primary chorister was too much for me to handle. There have been a few times where I have gotten sick and dizzy while I was standing and singing. I would have to stop waving my arm, lean on the table. I don't know if it is too much, but what I do know, is that it is one of my all time favorite things to do in the church. A place I can really make a difference. I LOVE it! But now that I am damaged, people wonder, and I guess I do too. I don't want to be put out to pasture. I NEED to be involved, actively engaged.
All of the people above are hero's to me, examples of perseverance and faithfulness, come what may. I have no doubt that all are, or will be, those in the after life, whom we will look at in awe and wonder, and wish that we could have had the earthly experiences they had to have received the blessings they have received.
And aren't we all damaged goods after all? I say we are. What do you have branded on your body? Some of those stigmas are more visible than others. We are all in this together. I feel the power and strength that comes through prayer. Prayer from friends, but mostly family. I feel the love of a mother and father who have given and sacrificed all they have for me, and all their children. I feel the love and concern that comes from dedicated, loving children. And a spouse who must go through those alone times as well, wondering what the future has in store.
But mostly I feel the love from a Father and Son, whose birth we celebrate. It is my prayer that at this Christmas time I may focus on all I have been blessed with, all I can do, my new normal.
Friday, November 20, 2009
Thanksgiving garbage
Curtis is a fan of Seinfeld. So am I. Curt has Kramer, George, and Jerry down to a tee. Though I think my favorites are George's parents. Nils used to be but not since his mission so much. He has better grown -up, responsible things to do now.
One of my favorite episodes is where George is at his girl friend's parents home for dinner. He goes into the kitchen and much to his horror, he sees a perfectly good, only one-bite-eaten- out-of-it (K, maybe 2 or 3) yummy, gooey, creamy, chocolaty eclair sitting there IN the garbage can! After staring at it for what seemed like hours, he did what any normal human being would do. He reached in, took it out, and began eating it. You guessed it. Just as he took that heavenly bite, in walks his girl friend's mom. The rest of the story is awesome, listening to George trying to hilariously justify his garbage eating position.
I worked at Nordstrom for just over 10 years. (There will be some upcoming blogs on the joys of working under a direct descendant of Hitler) Did any of you experience the rice krispie treats from the E bar? They were not just any RK treats. They were about 6 inches high. You could get them with or without a layer of rich and creamy milk chocolate. I always got the later.
I was on the closing shift one night in the hosiery department which could be covered by half a person, but since those were hard to come by, I would have to do. There, sitting IN the garbage was, you guessed it, a RK treat! It was still kind of wrapped up, kind of. The only exposed part was where a teeny, tiny, itty, bitty, little bite had been taken out. I looked to my left, I looked to my right, I looked in back, and of course ahead for any sign of anyone. Hey, I was starving! and even if I hadn't been, I still would have eaten it. And man was it good!
With Thanksgiving less than a week away, I imagine there will be lots of great garbage available to only the bravest of us all. Here is my advice: wait until everyone is in that post turkey tryptophan stupor. Then be the good servant and volunteer for kitchen duty. Insist on doing it without any help. You will have the garbage all to yourself. Then.....Have at it!
Come on. I know you eat garbage too!
One of my favorite episodes is where George is at his girl friend's parents home for dinner. He goes into the kitchen and much to his horror, he sees a perfectly good, only one-bite-eaten- out-of-it (K, maybe 2 or 3) yummy, gooey, creamy, chocolaty eclair sitting there IN the garbage can! After staring at it for what seemed like hours, he did what any normal human being would do. He reached in, took it out, and began eating it. You guessed it. Just as he took that heavenly bite, in walks his girl friend's mom. The rest of the story is awesome, listening to George trying to hilariously justify his garbage eating position.
I worked at Nordstrom for just over 10 years. (There will be some upcoming blogs on the joys of working under a direct descendant of Hitler) Did any of you experience the rice krispie treats from the E bar? They were not just any RK treats. They were about 6 inches high. You could get them with or without a layer of rich and creamy milk chocolate. I always got the later.
I was on the closing shift one night in the hosiery department which could be covered by half a person, but since those were hard to come by, I would have to do. There, sitting IN the garbage was, you guessed it, a RK treat! It was still kind of wrapped up, kind of. The only exposed part was where a teeny, tiny, itty, bitty, little bite had been taken out. I looked to my left, I looked to my right, I looked in back, and of course ahead for any sign of anyone. Hey, I was starving! and even if I hadn't been, I still would have eaten it. And man was it good!
With Thanksgiving less than a week away, I imagine there will be lots of great garbage available to only the bravest of us all. Here is my advice: wait until everyone is in that post turkey tryptophan stupor. Then be the good servant and volunteer for kitchen duty. Insist on doing it without any help. You will have the garbage all to yourself. Then.....Have at it!
Come on. I know you eat garbage too!
Wednesday, November 18, 2009
Texting..
I had a great birthday. I drove to Levan where I spent the night with a dear friend and then taught a mini class in her RS on making pecan rolls. It was great spending time with Paula and Annie though we didn't get a lot of time to ourselves. Nils and Paula's son Collin, are roomies at Utah State. We go back about 30 years. I drove home in a blizzard, well, maybe not that bad but bad enough that there were cars off the freeway and a few that had turned upside down. That night we went with several couples to Cheesecake Factory for dinner. It dawned on me that everyone we went with had to get babysitters. Hum. We should have gone to Chuck A Rama. Isn't that where old people go? My dad, Tolman and I like Chuck -A. My dad's 85, Tolman is 5, and I am somehwere in the middle. Hum again.
Great weekend, except that I haven't been feeling well. Ron could tell, sitting across from me at dinner. I hope no one else could.
As I was leading the music in Primary, I had to sit on the table up front and stop waving my arms. I couldn't lead at all in senior as I felt too sick. I woke up Monday morning feeling pretty bad and it lasted throughout the day. I had a feeling it was my blood pressure. It has continually gone up for the last 3 months. To make a long story short, I was at the doctor's office before they opened. I didn't want to wait. My BP was high but not ER dangerous high. Other than that, all my vitals were fine. Then he did an EKG. It is my 3rd or 4th one since June. The doc came in the room and said it indicated I had had a heart attack at some point. Sometimes the abnormal reading can mean something else. I'm going to a heart clinic this morning for a stress test and echo cardiogram, which I believe is an ultra sound of the heart. Stress test?! Of course I've been stressed! But no longer. Sami finally found out that Sydney is hers! Oh happy day!
Now what. First of all, we called Jami on the way home to let her know the news and that I wouldn't be up for tending. Ron let Curtis know. So what did I do? A dumb idiot thing. I texted the rest of my kids. This is not news that should be sent via text. And poor Jame gets the phone calls from frantic sibs. WHY did I do that! I had a hard enough time telling my mom the news. We both started crying.
Texting. No emotion. Matter of fact. No personality. Control. Convenient. All of the above and more. Not a good way to communicate. In fact, does it count as communicating? Some things can be communicated appropriately through technology, where clearly, other things just should not be.
So, I am sorry to my family for being a dork. I can make excuses but it just wasn't right. It is just that some things are easier to type than to say out loud. But I won't make that mistake again. I promise.
Great weekend, except that I haven't been feeling well. Ron could tell, sitting across from me at dinner. I hope no one else could.
As I was leading the music in Primary, I had to sit on the table up front and stop waving my arms. I couldn't lead at all in senior as I felt too sick. I woke up Monday morning feeling pretty bad and it lasted throughout the day. I had a feeling it was my blood pressure. It has continually gone up for the last 3 months. To make a long story short, I was at the doctor's office before they opened. I didn't want to wait. My BP was high but not ER dangerous high. Other than that, all my vitals were fine. Then he did an EKG. It is my 3rd or 4th one since June. The doc came in the room and said it indicated I had had a heart attack at some point. Sometimes the abnormal reading can mean something else. I'm going to a heart clinic this morning for a stress test and echo cardiogram, which I believe is an ultra sound of the heart. Stress test?! Of course I've been stressed! But no longer. Sami finally found out that Sydney is hers! Oh happy day!
Now what. First of all, we called Jami on the way home to let her know the news and that I wouldn't be up for tending. Ron let Curtis know. So what did I do? A dumb idiot thing. I texted the rest of my kids. This is not news that should be sent via text. And poor Jame gets the phone calls from frantic sibs. WHY did I do that! I had a hard enough time telling my mom the news. We both started crying.
Texting. No emotion. Matter of fact. No personality. Control. Convenient. All of the above and more. Not a good way to communicate. In fact, does it count as communicating? Some things can be communicated appropriately through technology, where clearly, other things just should not be.
So, I am sorry to my family for being a dork. I can make excuses but it just wasn't right. It is just that some things are easier to type than to say out loud. But I won't make that mistake again. I promise.
Friday, November 13, 2009
Guilty pleasure
Finally! Sami found out that Sydney is her baby! Now what. Sue-a might be in the very near future for Nicole. She is crazy anyway, or maybe she will just disappear, possibly with Stefeno. Or EJ might have them both taken out. I would! What the heck! Now the big question: Will Sami and EJ get back together? I hope not. Rafe and Sami are the cutest couple!
Now, much more inconsequential news. No transplant, at least not now. I'm kind of in a catch 22. My doc doesn't recommend a transplant at this time. I was pretty bummed, as my left eye is doing so well. I would like to get it done and over with. That has changed from my April appointment, before we knew about MCTD. I am on too many meds, some that could make rejection a higher risk, and prednisone that messes with eyesight. What doesn't prednisone do! the miracle drug from hell as a good friend calls it. Puffy face, brittle bones, sleeplessness, just to name a few. But, I can move because of it. The doc can get me seeing really quite well with the right prescription. The problem is, is that I have to be on a steady, consistent dose of prednisone. My eyes need to be at a stable point. I am grateful for great doctors who listen and care. My eye doctor has been with me for 30 years. He is incredible!
After my appointment I went to the music store. I wanted to see if there were any great Christmas piano solos. I have tons of music. I wanted something new. Nope. There wasn't. Mostly too easy and cheesy. I would love to take the time and do my own arrangements of lots of things. Good idea. I asked our music person if I could play in church. I want and need some incentive to start playing again. Playing hurts my hands. I'm afraid if I don't keep going, I may loose the ability to play at all. That would be tragic for me. So, if anyone needs an accompanist, or a Christmas solo for church, call me. I am starting to teach piano the first of the year as well. I am so stoked!
Off to Levan to have a sleepover with my friend.
Now, much more inconsequential news. No transplant, at least not now. I'm kind of in a catch 22. My doc doesn't recommend a transplant at this time. I was pretty bummed, as my left eye is doing so well. I would like to get it done and over with. That has changed from my April appointment, before we knew about MCTD. I am on too many meds, some that could make rejection a higher risk, and prednisone that messes with eyesight. What doesn't prednisone do! the miracle drug from hell as a good friend calls it. Puffy face, brittle bones, sleeplessness, just to name a few. But, I can move because of it. The doc can get me seeing really quite well with the right prescription. The problem is, is that I have to be on a steady, consistent dose of prednisone. My eyes need to be at a stable point. I am grateful for great doctors who listen and care. My eye doctor has been with me for 30 years. He is incredible!
After my appointment I went to the music store. I wanted to see if there were any great Christmas piano solos. I have tons of music. I wanted something new. Nope. There wasn't. Mostly too easy and cheesy. I would love to take the time and do my own arrangements of lots of things. Good idea. I asked our music person if I could play in church. I want and need some incentive to start playing again. Playing hurts my hands. I'm afraid if I don't keep going, I may loose the ability to play at all. That would be tragic for me. So, if anyone needs an accompanist, or a Christmas solo for church, call me. I am starting to teach piano the first of the year as well. I am so stoked!
Off to Levan to have a sleepover with my friend.
Thursday, November 12, 2009
update..
I have been on edge lately. I have been feeling like my home is dirty and unorganized, too much stuff. So I have been a cleaning maniac in my sick sort of way. I don't have the energy to do what I used to do. My joints hurt and won't let me move like I used to as well.
I am going to my eye doctor today to see about my 4th, and hopefully final cornea transplant. When I saw him last April, he said my right cornea had thinned out way too much and that a new one would be needed. He thought I could hold it off for another year but because of all the meds I'm on, I will need it ASAP. I'll find out today.
I had a great time with my g-kids last night. They brighten my day and lighten my load. I am so grateful for my darling children who love and support me, and each other as well.
It has been a big week with Curtis' b-ball try-outs and all the drama that has come with drama, aka, the lead he got in the school play but was not able to do because of b-ball. Ron and I feel like they could have worked with him a bit. Oh well. Lots of decisions and choices.
Lots of thoughts with my b-day approaching. Also Jami and Curtis'. More on that subject later.
Happy Harvest!
I am going to my eye doctor today to see about my 4th, and hopefully final cornea transplant. When I saw him last April, he said my right cornea had thinned out way too much and that a new one would be needed. He thought I could hold it off for another year but because of all the meds I'm on, I will need it ASAP. I'll find out today.
I had a great time with my g-kids last night. They brighten my day and lighten my load. I am so grateful for my darling children who love and support me, and each other as well.
It has been a big week with Curtis' b-ball try-outs and all the drama that has come with drama, aka, the lead he got in the school play but was not able to do because of b-ball. Ron and I feel like they could have worked with him a bit. Oh well. Lots of decisions and choices.
Lots of thoughts with my b-day approaching. Also Jami and Curtis'. More on that subject later.
Happy Harvest!
Friday, November 6, 2009
So on and so on.....
Feeling a bit useless.
So many things I want to do.
Craving a purpose.
Taking up space.
Seminary teaching of the evils of gayness.
A brother who loves and adores his sister.
A family who loves and supports unconditionally. " True Christlike love" as Elder Ballard told her.
Basketball or a lead in the play.
Why can't he do both.
Fear, not of death, but of living painfully in body, but mostly soul.
Depression/sadness.
Another transplant before the end of the year most likely.
Why do I have to be sick during my favorite season.
Pushing and pushing.
Mental exhaustion.
So on and so on.
Chalk it up to a bad week.
So many things I want to do.
Craving a purpose.
Taking up space.
Seminary teaching of the evils of gayness.
A brother who loves and adores his sister.
A family who loves and supports unconditionally. " True Christlike love" as Elder Ballard told her.
Basketball or a lead in the play.
Why can't he do both.
Fear, not of death, but of living painfully in body, but mostly soul.
Depression/sadness.
Another transplant before the end of the year most likely.
Why do I have to be sick during my favorite season.
Pushing and pushing.
Mental exhaustion.
So on and so on.
Chalk it up to a bad week.
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