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.

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!

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.

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.

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!

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.

Less stuff, more life

I watched a fascinating show where Oprah went to different parts of the world to see how other people live. The most fascinating to me was Copenhagen Denmark. They are supposedly the happiest people on earth. One of the couples interviewed had 3 children, a pair of twins, and then one other child. Upon asking where the twins were, she was told they were out in the court, (sidewalk in our terms) taking a nap. Oprah was flaberghasted, as was I, that parents can leave their children unattended and not fear for the craziness that happens in the states. They are taxed 15% which got into the health issues of the country. None of them had ever seen any homeless people, and there is not much difference in the classes. People choose a profession based on their talents and interests, not on what a paycheck would be. Most of employees are out the door by 4 pm, 5 at the latest, to spend time with their families. They are not a religious people in the traditional sense. Only one of the women interviewed believed in a God. They don't believe in marriage so much, it is "just a piece of paper".

Their lives are very simple. And the most interesting to me was how small, tiny really, their living quarters are, but very nice. One of the women had a shower as part of the sitting area, or in our terms, living room. It had clear glass doors! I envisioned me living there taking a shower. I am still having nightmares! The decor was functional, and that was it. Their refrigerators were small as well, as part of the daily routine is going to the market, thus, their diets are very healthy and fresh. When Oprah commented on the simplicity of their homes, the reply was "less stuff, more life". I loved that! Except that I looked at everything I am surrounded by and felt suffocated by all my needless junk!

It is past time to do some serious shoveling out. I need to surround myself in simplicity. Too much stuff.

I loved seeing how others live around the world. I am grateful for the country I live in but also believe that there is much to be learned from others around the world.

I think I'll go clean out closets or maybe unpack some boxes that have been sitting downstairs since we moved. Come on. I know you have some too! Oh stuff it! I'm going back to bed.

Symptoms

Ron and I were talking this morning of one of the symptoms associated with MCTD. (See #3) There are many, some more serious than others. I have listed some of them in earlier posts but I thought I should list some of the MOST serious, just for awareness and maybe some understanding.

Here goes:
Naught remembering how to spell, i.e. brane kramps.
Very important naught to EVER diet again!
New meaning to the frase, " Not this month dear. I have a headache." (#3)

Severe allergic reactions to many things such as:
Dusting
Making dinner or any cooking period.
Organizing closets. Actually anything for that matter.
Believe it or not, shopping! (Ron thought he'd NEVER see the day)
Cleaning out kitchen cupboards.
Mopping floors.

Also, there are many things proven to make the disease go into remission.
Make sure to eat as much chocolate as possible.
Have music playing loudly all the time.
It is very important that Ron, Curtis and I go out to dinner lots.
Travel is proven to slow down the progression, especially, well, anywhere an airplane is involved.
Doing whatever I want to do every single day.
Eating whatever I want every single day.
Getting a dog. (Really Ron. I KNOW I read that somewhere)
Make sure to keep on top of "Days of Our Lives". I mean, what is Nicole going to do? And when is Sami going to find out the truth about her baby she thought had died that Nicole adopted and everyone just found out is Mia's,(but really isn't) and Chad wants now that he just found out he's the dad?! And I thought I had it rough!

This is just to name a few. I'm sure I will think, I mean, find out about others as time goes on.

Seriously. What?!

Stages of Grief..

It seems as though I haven't had much to say. My mind has been too busy trying to process too many things. First of all, I was able to go to Seattle to visit Chel. I had such a great time. We didn't sight see. We just spent time with each other walking, biking, and lots of talking. The highlight was getting to see my new grand-doggy! Harley is so cute! I am glad Chels got a dog. Everyone needs a dog, but especially Chel. Seattle is so beautiful! Green is everywhere. We walked on a path that was more like a tunnel of green. Just 10 yards from her place is a beautiful little river. I was so nourished by it's beauty.

On the plane ride over, I was all of a sudden struck with reality. I felt quite horrible the day I left and as I was waiting to board the plane, I looked around at all the people. I wondered how many others were like me. I wanted to jump up and down and scream at the top of my lungs, "I might look normal but I'm not. I'm sick and I feel awful!" It then hit me like a ton of bricks. How ironic. First my husband and now me. How is it that we both have auto immune diseases? How can that be?

I came across the 5 stages of grief. Grief is oftentimes misunderstood. Grief can be the loss of anything. And in my case, it is the loss of my health, the loss of what I thought my future would be and the reality of what it is now. The stages are: denial, anger, bargaining, depression, and acceptance. They don't necessarily go in any order. And you don't always experience every one. I'm in the pissed off stage. I guess that is anger. I go in and out of the denial as well. I don't believe many times. There is no way my antibody levels were at 10,200+ when normal levels are from 0-80. Even the U of U doctor had a hard time believing those numbers until he ran them again. What the heck, and how many years have they been off the charts? Why didn't my other doc think to run some of those tests when I kept going in saying something wasn't right? Would it have made any difference anyway? Why is it that one day I can feel OK and the next, I can't get my head off the pillow? Why do I have to look like a monster besides all the other stuff? (My family hates it when I say I look like a monster) My teeth are even affected. Ron can always tell bad days because my whole body swells up.

Yep, I'm in the anger stage all right and I think that's OK. I fight when I'm angry. I don't know about the other stages. I have been told that I need to get to acceptance. Maybe. I just don't know how.

I guess I am having a down time as well. I try to stay up all the time for my family, and for me. But I am sad. What stage is sad? It isn't really depression I don't think. It is just feeling really sad. I hope I don't feel pity. I don't want pity. I think there should be an overwhelmed stage. Yeah, I feel overwhelmed.

Seattle was great. It made me realize how important it is to get out of our ruts. I used to do it by running, playing the piano, and even making dolls. I have to find a rut-getter-outter I can do several times a week.

And maybe I need to get to acceptance.

Thankfulness

Sunday was an incredible day. I had 3 birthdays to celebrate and the day ended with Ron inviting several friends over to give me a blessing. More on that to come. My BFF growing up, Kate Date as she is affectionately known. Kate lives in Texas so I never get to see her. She is an incredible musician. She plays the piano and has a beautiful voice. But my favorite is her mastery of the cello. We grew up playing together, she on the cello and me accompanying her. Our mom's even made us matching dresses and bought us matching red shoes when we were in 4th grade for some performance somewhere. I love you Kate Date!

My baby bro, Stephen Preston, turned 45. He is 8 years younger than I. We were very close. Nils' middle name is Stephen, after my bro. Steve lives in Boston and I rarely get to see him. He has a beautiful wife and 4 gorgeous children. They came to visit this summer and it was so great to see him. I marvel at his fathering skills. He and Heather are such great parents. Love you Steve, and I have got to get back to see your new home!

The 3rd b-day is our baby Andy. He was born 16 years ago. He is always in the back of my mind, but the beautiful fall time of year, brings him to the fore front of my thoughts.

The Sunday meetings were all so uplifting and motivating. But the one thing that stood out, was the beautiful closing prayer that was offered in RS. It was a sermon in and of itself. The Spirit was so strong. We were all taught well.

The day ended with Ron inviting several men over to give me a blessing. It was so powerful and strong. I am trying to remember and record the thoughts I had. I had such a powerful feeling of peace. I wasn't told I would get well, but was given counsel on dealing with this life changing adventure.

One of the women suggested that Curtis have a blessing as well. I will be forever grateful for her inspiration. Many of his hero's were there, his young men's leaders. He so loves and admires them. Ron asked Greg Fawson, his scout leader to offer the blessing. Greg has been through an incredible last month and a half, with his darling Chantel. Chantel should really not be alive. They have been through so much, and I can only imagine the alone times Greg had as he could only witness the pains his sweetheart was going through. In a nutshell, she has had a chunk of her skull taken out, and her brain operated on to fix the problem. Everything about this experience has been nothing short of miraculous! Anyway, one of the first things Greg said to Curtis, is that there are guardian angels surrounding him to bear him up. I know that Curtis' special angel is his big bro, Andy. Thank you Greg, for your righteousness and inspiration.

Curtis and I were lying in bed talking the day over. He expressed thankfulness for living in such a great neighborhood with so many great friends. The Priesthood blessings that were offered, brought him, and me, so much needed comfort and peace. I am so grateful to the many adult examples of Christlike living. I am so grateful to his great friends, and to their parents. Thank you for looking out for my son.

I am so grateful for the gospel of Jesus Christ. I know He lives. I know He loves me. I know He knows all the thoughts and feelings of my heart. I know He knows the physical and mental pains I am going through, and that I will yet go through. He can succor me and bless me. He can show me the way. I am so grateful for the plan of salvation so I can live with Him again. I am a very blessed woman.

I have so much to live for, so much to look forward to. And through all the love and support coming the Nelson's way, I am going to be OK. And so will the rest of our family.

Thank you.

I hope and I pray

Ron, Jess, and Curt are running a 5K tomorrow. It is fun listening to them talk about the event. There are races every weekend. That is what I used to do. Connie and I would look at the race calender and plan our Saturday's around those races. We loved it! Even if we didn't, we did. My dream was to run a race preferably a marathon, with my children. Now they are all running and I am sitting on the sideline. I don't like my new spot as a spectator.

Last Thanksgiving, my dream came true. My whole family, including Ron and I, got up early, and ran a 5K! It was perfect! I was in heaven! Why do I love that so much? I felt good as well. I was still on pain pills, and the thought is that they were masking symptoms of this disease.

I've had a really tough week. I try to be strong and not let on too much how I'm really feeling. I'm scared, as I feel my body being ravaged. The methotrexate really kicked my butt! I am trying to figure what days would be best to be sick and plan the dosage accordingly. I think I will try Sunday night so I can be OK by mid week. I will make sure I don't run out of the prednisone again.

I hope and pray that the meds hurry and do what they are supposed to do. I hope and pray that this unwelcome intruder will hurry into a remission. I have a race to get ready for this Thanksgiving!

Good Morning

I ran out of my prednisone yesterday and it is amazing the difference taking that medication from hell, makes. I'm only 1 pill behind yet I woke up in the middle of the night in quite a bit more pain. And, I am much more stiff this morning. Not to worry. I will get more today.

Though I woke up in pain, I was SO grateful I didn't need pain pills to get me going. Back in addiction days, that's what I would do first thing in the morning. Take a pill. If not, I would feel quite awful.

I would so much rather have the pains I have now than all the pains that come with addiction. I don't know what the future has in store for me, but whatever that is, I will face it with a clear mind. I am grateful.

That's all.

Midway

I would like to comment on my appointment with my rheumatologist yesterday. I would like to tell everyone my experience with the lab tech, as she was such a dork. Instead, I am going to get positive and write about something much more important, my weekend of cheering for Jessica and Ron as they competed in their first triathlon, having my g-babies stay over night, and my sleep-over with Jami and her doll babies at the Zermatt in Midway.

Ron and Jess have trained for many months, swimming, biking, and running. They both are inspirations, as they worked and worked and worked to achieve this goal. overcoming many obstacles and set backs, but never, ever giving up! Way to go you two!

Jami and Dave got to go on a much needed and deserved get-away to the Zermatt in Midway, Utah. Ron and I used to do that all the time, and they were great! And, I got to have Tolman and Addison. Sunday after church, I couldn't find Addi's bink anywhere. I was exhausted and finally plopped on my bed and said, "Addi, I can't find your binki anywhere and I'm too tired to look any more." She burst into song singing, "Don't stop. Just keep on trying. Don't every give up." I laughed and laughed, but still didn't get up to keep looking! (PS. I finally found the bink stuffed in the bottom of her pillow case) This little 2 1/2 year old is so dang funny! She has such an adorable, quirky personality.

I drove the kiddos up to meet Jami and spend Sunday night with her, as Dave had to be back to work early Monday morning. I can't explain how great it was on all levels. Ron's father bought a little home on main street Midway about 40 years ago. They worked and worked on that little home for years and years, renovating and restoring it until it became a little piece of heaven, where I would often escape to with or without friends. I fell in love with Midway! I wish I had the talent of writing so I could describe the beauty, and the feelings of my heart when I entered Heber Valley. But I don't, so I will just say that any worries, anxieties, fears, or insecurities, all but disappeared whenever I would go, and I went often.

I loved driving Tol and Addi by the historical home on main street. I loved telling them about the birthday parties their mommy had with all her friends. About the big back-seat -of -a -car swing the neighbors had. Tol wanted to go see it, and possibly swing on it as well, just like his mom did when she was his age. I drove by the Timp Freeze and told them of the great soft-serve sherbet cones they had, with little plastic monkeys, and other animals, that they would put on top. I wanted to drive the 12 mile route where I took Curtis on a walk when he was 5 months old. He and I stayed there for a whole week! I ran my very first race, a 10K at Swiss Days, probably 25 years ago. Midway introduced me to my love of running. I wanted to jump out of the car and run it again. When Ron and I were dating, we would make a picnic, get a blanket, and go eat it by the river. I think we made out some as well. No, actually, I know we did! I don't know. Maybe we read scriptures. Yeah. That's what we did, I'm sure. Fun times!

Ron's 3 brothers bought the home from their dad and his partner, many years ago. We were not able to, as we were not in a financial position to do so. I never went again. My heart ached as I tucked my little sanctuary deep into the place where sacred memories reside.

The Zermatt is an A #1 classy resort. Many of the restaurants have won Best of State, and the food was delicious! But more delicious than the food, was being with Jami and her children. My heart was filled with joy as I watched my baby mother her babies! I loved watching the children pull the shades up and down, playing in the jet-tube yelling, "Gram! Come and watch me!", going out on the deck with heart shaped cut-outs in the wood railing to look at the little goats on the hillside, and the beautiful flowers in the window boxes, riding on the carousel, and purchasing milk-bone dog biscuits to feed the little goats.

After checking out, we played miniature golf. It was Tolman's first time. He got the hang of it and had a great time. Addi did her own thing with the ball and club. She loved holding the putter upside down, and putting with the handle. After the golf, we bought some yummy gelato to enjoy. Addi got the pink flavor. She loves anything pink and princess!

It was time to go home, as I as meeting Ron down town, as he was going to Logan with me, to my doctor's appointment.

I'm going to end this here, as I will get to the visit with the doctor later. Thank you Jami, for letting me experience the joy of memories from the past, and memories made for the future. I love you so much.

My bucket list..

I woke up this morning ready to tackle the world. I even put my running shoes on. But, my body had other plans. I have started methotrexate, a medicine that was commonly used for chemotherapy, thus many of the chemo side effects. i think that could be my problem today. So, I did what I always do when my body is being stubborn. I took a hot bubble bath.

I sat in the bath, closed my eyes, and went on some wonderful adventures. I dare say that pictures with a camera could not have been more beautiful! I came back to my bubbly retreat and started my new bucket list. Here goes:

1. Make a sanctuary of my master bedroom and bath, simply by just that, simplifying. And painting some soothing colors. (K, maybe more of a goal)
2. Have a private piano recital. I have always wanted to do that.
3. Run, jump, jog, walk, crawl, whatever, however, the St George marathon when I turn 55, 2 more years, with some or all of my children. Can you think of a better way to celebrate? Not me.
4. Learn a foreign language, preferably Italian or French, though Spanish would be more practical. Who cares about practical!
5. Go on an Alaskan cruise, but only if we could go on adventures off the ship for days at a time. Or, just go to Alaska without the cruise.
6. Visit all the beautiful castles in Scotland and Ireland, and visit Lewelyn's grave. I fell in love with the history, especially the incredibly strong and courageous women in the historical novels by Sharon Kaye Penman. You can borrow them if you want. (Thanks Connie!)
7. Go on a biking tour of the New England States, or Canada.
8. Hike to Havasupai.
9. Go skydiving without someone strapped to my back. (Kind of scared for that) I promise to open the shoot Ron!

I think that's a good start for now. I'll add to it later. But I better get busy. I need to go practice the piano.

The man in the hole

Yesterday was very humbling. I had lots of friends and family fasting and praying for me. The bishop also announced in church to keep "Sister Nelson in your prayers..". It was also announced in Relief Society. And to hear my name in a prayer was very humbling. And I must say, I learned a great lesson. It is so much tougher being on the receiving end of service. I was uncomfortable being prayed for publicly. But very grateful, for I know that there is power in prayers offered in unity.

So the latest diagnosis is going down a direction called mixed connective tissue disease, or MCTD for short. I don't know much about it other that what I have read on the Internet. I think the concern will be the extent of damage to internal organs. I think they are fine. I will be finding out with more tests I'm sure.

I am feeling many different things. Of course I am sad. Sad for what I thought my life after pills would be like. But mostly sad for the toll this is taking on my family. I can deal with what comes my way, but I keep thinking it isn't fair for my children to have to go through yet one more trial. The girls grew up not knowing or thinking that their dad would live to see his 50th birthday. I didn't either. It was very hard on them. They had so many responsibilities not put on too many children. I sometimes wonder how much more they can take. But, they became so close as a result. They have had so many trials other than family illnesses. They are tough. They are strong, But more important than anything, they all have been taught about the Atonement, our Savior's love for them and that there are not any trials we have to go through alone.

There is a story I am stealing from my friend. It is about a man who fell into a deep dark hole. Try as he might, he could not get out. A doctor walked by and saw the man. He wrote out a prescription and threw it down the hole. A preacher walked by and threw down a prayer. Another man came along and jumped in the hole with him. The man said, "Oh great! Now we are both stuck!" The other man replied, " No, I have been down here before so I can show you the way out."

The Savior can show us the way out of any hole we my be in, because he has literally been there. He conquered, and he can show us how to conquer if we let him. How much tougher our trials would be if we didn't have this knowledge.

And for that knowledge, I am so very grateful.

The summer of sick

So many thoughts swirling everywhere in my brain. Trying to organize them seems rather impossible at the moment.

How funny that this getting of pills blog has taken a huge detour. I haven't written about pills for some time as they have not been on my mind at all. Until yesterday. It is very clear to me why getting of pills has been next to impossible in past attempts. Even when I was in rehab. I never felt good. Not only that, but felt quite bad. I always wondered why, when everyone else was on many kinds of drugs and much more potent. I'm not a wimpy person. What was going on? I was older they said. What about the 82 year old alcoholic? She did amazingly well. She wanted it more. She tried harder. She complied. That is what they said. I didn't know how to try any harder. I didn't know how not to be sick. I kept going. Until I got home and had to go back to work. I wish I knew the number of times I told my doc. Something isn't right. Hypochondriac was his thought I'm sure. Run some routine blood tests. Always normal. I was sick in the head. More pills will get her out of the office. More refills as well. That way he wouldn't have to deal with me for many months. I don't blame him. Most of these tests are very rare. A doctor has to be very aggressive. Maybe my symptoms were just too vague.

Getting to the bottom of all this has been quite the journey. I'm OK. Nothing scares me. There are miracles happening everywhere. I'm grateful I have had this summer to be sick. Knowledge is power. Now that i have the knowledge, I can fight and fight and fight and fight.

Bring it on!

The phone call

I got a call from the doc today. It went something like this: Hello. Hello. Is this Sharon? Yes it is. We got the results from your tests Your ANA test was high which means you have an auto immune disease The Doctor wants to start you on Methotrexate 4 pills once a week Do you take vitamins Could you hold for a minute The doc is also going to have you take a perscription of folic acid What pharmacy do you use Do you have the phone number You also need to go in for more tests I have worked for Dr Walker for 3 years and I am not familiar with these tests but I'll ask him what he is looking for We need to see you in 3 weeks.

I didn't hear much of what she just said. ANA. Auto immune disease. Methotrexate. 4 pills once a week. More tests. I asked her if she would mind repeating what she just said. She did. I thought I listened. I asked her for a third time to please clarify what she had just said 2 previous times. Her nice voice had a little edge to it now. I don't blame her. She had a job to do. More victims to call.

I had so many questions. Why more tests? What is he looking for now? Folic acid? Prescription? I didn't know folic acid came in a prescription. What about rheumatoid arthritis? Lupus? Scleroderma? What? What about my elbow that won't bend enough to let my right hand reach my mouth to eat? or brush my teeth? or take off an earring? or necklace? That just started yesterday. Just double up on your prednisone. Can I take the prednisone with the methotrxate? It's just fine. Fine for who? What about long term? I'll get back to you on the tests. Come to the lab on the 3rd floor. I am from South Jordan. Can I get them in Salt Lake? Go to IMC, the Eccles building. I faxed the order in. It may take up to 2 weeks to get the results. He is looking for Lupus. Does that rule out scleroderma? I don't know what that answer is. I hope and pray they aren't looking for that, or that it was ruled out. It is bad. Deadly bad.

The great thing about being down is that there is only one way to go. Up.

Lessons

There was a fascinating 2 page spread in today's SL tribune. It was the story of a man who was critically injured in a bike accident last November. He is basically a quadriplegic. This man was a professor of English at the U of U. He loved the out of doors spending much of his free time surrounded by it's magnificence and beauty. He took nourishment and strength from the lessons that only nature can teach. He loved pushing his body, past it's limits sometimes, in all kinds of adventures. That all changed in a split second.

He told of the many lessons he has learned from being very independent, to now being dependant for even each breath he takes. He was asked if he would trade dressing, feeding, breathing, walking himself, you name it, in place of the lessons he has learned. He said, "I'd give up physical autonomy . I have learned the depth of compassion and friendship."

My honey and I went on a 2+ mile walk around the lake last night. It was great on so many levels. Ron told me of all the running routes he takes and how many miles they are. He stopped several times to assess yardage from point A to point B.

I also felt somewhat sad, as that is what I used to do all the time. I used to have sooo many running routes with all of the corresponding mileage. I asked Ron if he thought I would ever run again. He isn't sure. I'm not either I guess, as my feet, ankles, knees, even toes, were cramping up.

Would I give up lessons learned from trials experienced? Interesting. Because of my addiction, my children are all very cautious, paranoid almost, of taking any medications. I'm grateful for addiction. Our children had to lean on each other during the years and years of their dad's illnesses. They all support and love each in all they are and do. I'll take it. Losing Andy brought us Curtis. You all know the answer to that. With that came an empathy for women who can never have children. Corneal transplants blessed me with a deeper understanding of the atonement. Jami's car accident brought a dependence on the Savior I had not had. My prayers for my daughter, and a mother who lost her son, were never so fervent. I learned a better way of communicating with Deity. Having a daughter in turmoil to the point of contemplating suicide, taught me the deeper meaning of unconditional Christlike love.

There are other lessons I have learned from other experiences, and other experiences I have yet to learn from.

I don't know what I'll learn from RA. I am still in the denial stage. Do I wish I didn't have it? Yep, I do. The lessons will come later.

Side effects...

Methotrexate..."Methotrexate is also used along with rest, physical therapy and sometimes other medications to treat severe active rheumatoid arthritis (RA; a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) that cannot be controlled by certain other medications. Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver, kidneys and bone marrow, which require regular monitoring with blood tests. It can cause headache and drowsiness which may resolve if the dose is lowered. Methotrexate can cause itching, skin rash, dizziness, and hair loss. A dry, non-productive cough can be a result of rare lung toxicity." PS..It takes about 3 months to start working. Until that time, prednisone, another toxic miracle drug. oh joy.

Hum... I was able to get into a rheumatologist on Tuesday. The reality of this disease hit me between the eyes! I start the above mentioned medication next Tues., after the results of my blood work comes in so he knows what dose I can handle. After feeling the adequate sorrow of my newly discovered bodily malfunctions, it is time to go to work.

New goals, new dreams, new everything. Chalk it up to another adventure called life.

Memories...

I loved being in church today. I was late for my sacrament so I snuck in another ward. I sat in the back. I had a clear view of everything that was going on. I found myself smiling as I watched mom's and dad's with their children. They would cradle the newborns cuddled against their chests. Wrestle with wiggly toddlers trying to keep them still. Shushing pre teens in an effort at being reverent. They would chase after those that had escaped the confines of the benches. I wondered what they would have done had one of their babes disappeared in back of the choir seats, and then stripped butt naked! like Chelsea did. I'm glad Chels got to give possibly the only moon ever displayed in the front of the chapel as I scooped up all her clothes and naked body, then briskly walked out! I was laughing the whole way. Good times. No, great times!

I can feel my body ravaged. I feel like an outsider watching helplessly as it gets worse everyday. I hold my breath trying to muster the strength after sitting down, to get in a standing position, as it hurts my knees so. I awaken in the middle of the night with hands that feel as though they have been frozen for decades, trying to break them free. It feels like my shoulders are going to pop out of joint just to support the weight of my arms. I take steps like my father does. He's 85.

I was overwhelmed with gratitude as I was watching in church today. I was grateful that I could cradle my children when they were babies. I was grateful I could chase them down the street for fun, or to save them from danger. I was grateful I could hike with them, throw them in the air, put them on my shoulders and play horsie. I was grateful I could walk down in their rooms and sit on their beds at night to read them stories or sing them a song. I'm grateful I could spank their behinds when they needed it. They didn't need it very often. I'm grateful I could load my 4 children in the van and take them to Brighton to teach them how to snow ski. I wasn't so grateful when they all started balling when they couldn't walk with their heavy ski boots on, and carry their equipment at the same time! I am grateful I could stand and stand and stand with pride, as it took Jessica 4 hours to ski to the bottom of Marys, the easiest run in all of Utah I think! I'm grateful I could keep up with Nils as he had NO fear and would ski straight from the top of the run, to the bottom, and that he would stop in the nick of time before killing himself of another skier. I'm grateful I was blessed with energy, health and strength beyond what any mother would normally have when I had to be both mom and dad. And that was many many many years.

Maybe I used it all up then. And that's OK. I'm grateful I had all I needed, and much more, when I really needed it.

How grateful I am that I could take care of my little ones, and not so little ones back then. I'm glad that my body waited until now to make even the smallest tasks, hard.

Yes, I loved being in church today. I am grateful for the trip God gave me down memory lane. I am grateful that I got to participate in all those adventures, and I have faith I will be back again. But if not, I have my memories.

Is God mad at me? I don't blame him. So am I.

Has God finally had enough? Does he finally realize I was the one who didn't shout for joy at the thought of having a body? I know I know. No lectures here. I am very fortunate. I know that, but right now, not so much. Just humor me and give me this moment. It will pass.

I have spent the last 2 days in bed, not because I was sick, just sick in the head. I have had a bad case of feel sorry for me. My fingers look like sausages, my wrists deformed, my feet, knees and ankles have puffs of swollenness. Even my shoulders and toes hurt. But worst of all is my face. My neck looks like that of a linebacker continuing up to my cheeks with slits for eyes. All this whatever it is, rheumatoid arthritis they think, makes it painful to move. But, my stomach issues are gone! With that, my appetite is, sigh, back. Kinda mad about that. Actually, really mad.

So, now, a new adventure and reason to blog. Or to keep me accountable. Maybe it is my way of journaling. Whatever. Anyway, new goal. I need to get my weight as low as possible to take as much pressure off my joints. Funny. It's not just a cosmetic thing anymore. They are in enough trouble that I have no control over, without me adding to that. I need get my butt in gear and do some things. Time to start walking and walking and walking. Also, some kind of diet. I hate diets. I HATE DIETS! I have always lost weight after babies by running, refusing to go on some kind of structured diet. And, it has always done the trick, and got me addicted to the high of those great endorphins floating through my brain on those days I could have run forever and ever! Even on days the runs were not so great. I loved them all. I loved that I'd run mostly 6 days a week for 25 years.

That's what I'll do. Walk. I'll see where that takes me before I do some horrible thing like diet. Yeah, that's where I'll start.

And I thought getting off pain pills was hard. Oh, this adventure called life!

Ramblings of 9th grade...Go Hornets!

Curtis starts 9th grade today. Can he really be that old?

I loved 9th grade. I remember Mr. Beards English class. Everyone dreaded Mr Beard as he was known to be really hard. He thought I was cute, so he liked me. So did Corey. If Corey could chase me around the room for 2 minutes and kiss me, he wouldn't have to take the dreaded Mythology test. If he couldn't catch me, I would get an A. He didn't catch me. I can't remember what Miss Hayes taught but she was a great teacher. She is Mrs. Hewlett now. She is also the g-ma of one of my neighbors. Small world. I stopped eating for awhile as I thought I was fat. I wasn't. We had early morning seminary back then. It wasn't released time. Poor Miss Gledhill. She was a horrible teacher but so fun to have if Kate was in the class as well. She would try to send Kate to the principals office. Kate would refuse to go. Miss Gledhill would try and drag her down but couldn't budge Kate. How we laughed. Poor Miss Gledhill. Poor any teacher that Kate didn't like but what a treat for the rest of us! Miss Mcbride had a train with candy in it. If the train stopped by your desk you got to take a piece. What did that have to do with learning how to type? Maybe that's why I never learned. I wore a light blue dress to graduation. Ms. Davis was my gym teacher. I even think she went by Ms. back then. She was a jock and so was I so she liked me. One Saturday I organized a group of about 15 boys and girls to ride our 10 speeds to the top of Big Cottonwood Canyon and back home again. Our bikes weighed as much as we did back then. Only Kate and I made it the whole way. The rolls and gravy! Hillside Jr. had the best rolls that melted in your mouth always hot from the oven. The cinnamon rolls as well. I didn't eat them very much. I would bring a thermos of some diet something usually. I was always on a diet. Stupid. And then there was Mrs. Schultz. She wore those really thick, black orthodic looking shoes. She seemed so old. I wonder if I am older now, than she was then. I hope not. She was the girls glee teacher. I loved glee. I was the accompanist. She liked that I could sight read and play whatever she wanted to teach the class. Why was it called glee and not choir? Hum. Mrs. Ray was my Home ec. teacher. She taught us about puberty and pimples. In Home ec? It seemed to fit together back then. She had one of those sicky sweet feminine voices that sounded like nails on a blackboard, but so fun to imitate. I remember when the Highland High Madrigals came and performed for an assembly. The boy ringing the bells for "Ring Bell" was really cute. I ended up marrying that cute boy. Who knew!

Yep, I loved 9th grade. I hope Curtis does too.

3 months almost..

Good thing I flushed the rest of the pain pills from surgery as I probably would have taken some last week. That's the way I was feeling. And heaven knows, I was/am hurting. Only when I move though. Every joint in my body is stiff, swollen and sore. But the good news is that I called several rheumatologists on our insurance plan and found one in Logan that can see me in 3 weeks. I will be glad to get started on a treatment plan. I will be glad to get over this hurdle.

It is so interesting how so many things have come to light since getting off pain pills. My life is different than what I imagined at this point. I joke that I was better on pain pills. I sure got a lot more accomplished each day and I felt a heck of a lot better! Not mentally though. Every time I took a pill, I felt bad, guilty even. I knew I was better than that. I knew I deserved better than what I was doing.

I'm glad it will be 3 months next week. I'm glad I have made it this far. And I plan on another 3 months, and 3 more after that, and so on and so on.

Any more marathons.. I hope so.

I am getting to know my doc way better than I had ever wanted to. I went to see him on Monday to try and get answers concerning not being able to move. He took xrays of my hands. The radiologist said I have inflammatory arthritis. There are many conditions that fall under that category none of which are good. It is an auto-immune disease with the likelihood of rheumatoid arthritis. The rheumatologist will figure all that out. I can't get in to see him for 3 months. Freak! 3 months? Are you kidding me! Oh well.

Upon hearing the news I had a bit of a break down, just for a day or two. I did what any daughter would do. I went to see my mom and dad. I had a sleep- over as a matter of fact. We spent the night talking and talking and talking, with a little bit of crying thrown in. We talked about everything, not just me, as that topic gets pretty boring. My mom reminded me of my patriarchal blessing. There is a part that speaks specifically of trials I will go through. My dad commented, How beautiful! What? How beautiful?! My choice of words would not have been beautiful. He got me thinking. It is beautiful, not what I would have chosen, but beautiful none the less.

There is a purpose in all we go through, both good and bad. The good parts are easy. The bad is where we grow and learn, become more like our Savior. That doesn't make these times any less hard, just endurable. Finding joy in the journey.

Whatever I have will not stop me. I might not be able to run another marathon, but don't count me out!

The work begins..

Monday was quite a day. Jami called and reminded me that all the Nelson girl cousins were going to Ruth's diner, my favorite place, to celebrate Abbey and Summer's b-days. I decided to go and I am so glad I did. It's been too long since we have gotten together. I then met Ron at Kent and Pams so that Ron and Kent could give Mindy a blessing. She was going in for major back surgery the next day. Ron and I raced home to go to a movie. It was our 32nd wedding anniversary. On our way, we got a call from our bishop telling us that our dear and darling friend and neighbor, Chantel, had been life-flighted to the U of U. She woke up not feeling well, but to make a long story short, she started seizing caused by bleeding on the brain. She had just given birth to their 3rd baby a few days earlier. Ron and I ran up to the hospital where there were several other ward members. We spent several hours trying to find out the diagnosis.

There is a ward fast for the Fawsons going on right now. I believe that miracles have already taken place. I know the power that comes from unified prayers and fasting through the faith of many. I love you Chantel. Blahbity blah...! (Chantel went to St George with me on my B day. She loves that phrase!)

As I was laying in bed that night with an exhausted body, my mind said, no sleeping for you tonight..too many things to think about, figure out maybe. It kept kept going to my adorable niece. She has struggled with addiction for years and things are not going too well. I asked her point blank. I'm so worried for her and I wish I could do something. I wish someone could. But we all know the answer and help is only in one place, within.

My fasting and prayers are for so many. Of course for dear Chantel and the whole Fawson family. For Mindy that her back will become whole. For my sweet niece. For my nephew Ryan, who just had his 4th baby. I'm sure he is missing his mom, my sister right now, and wishing that she could be here to help. She died of a blood clot that went to her lungs, 5 years ago on the 9th. Maybe even for me right now as well. I haven't done anything for so long that I don't know where or when to start. I'm feeling a bit lost. What to do. I also have to realize that my body is recovering from surgery still. I need to keep taking it easy for awhile longer.

My days were all defined for me. Not anymore. I was so hopeful and up a few days ago. It seemed like the world was mine, I could do anything. I'll be there again. Oh the difference a good night's sleep and a new day makes!

All in all I am doing good. (Refer to last post) There will always be hard times and down days. Now the work begins.

So Happy, and on my way! Wha Whoooo!

Here I am, so happy, really. And it feels so good. So good in fact, that I got out of bed around 5:30 and did way too much. Curtis has play practice all day so I made he and Ron a lunch, finished a long overdue thank you to the magical Kelly D. for helping us with some music, went out and weeded the garden, (just a few) and then took a nap. Then I decided to tackle Curtis' room. It not only needs tackling, but a whole freakin football team to get it in shape. (Wait, I would imagine football teams are pretty dirty and stinky!)

You know how one thing leads to another, well that's kind of what happened. And now I fear I am paying the price. But, it feels so great to not have that horrible whatever pain it was! I have the surgical pain, but only when I move. (oops! little too much moving) To show you how great my family is, last night I dropped a popsicle and could not bend over to pick it up. Me. Curits, will you pick up the popsicle for me? Curtis. Why don't you do it? Me. Because I can't. Curt. Why lazy! Me. It hurts my belly to bend over. C. Then get down on your knees! Oh such love in our family! Curt and I burst out laughing and that hurt my belly more! Last night we laid in bed, Curt and I, and he had me laughing so hard I thought I might do some major damage, but oh how much fun!

Family. How I love my family. Ron has continued to put up with a very onry wife, especially the last few weeks. I have really been on edge, I think mostly depressed. I haven't liked me too well, mostly. And then there are my kids. I already told you all the great things Curtis does. Jami came over and did her magic in my bedroom and bathroom. She washed my sheets and dusted, vacuumed..just made a great and CLEAN sanctuary that I can veg in for awhile. Jess, Chels, and Nils were all calling for updates and sending lots of prayers and love. Nils instigated a family fast for all those that could. He is such a spiritual rock for the family.

Then my mom and dad. I was at their home one week ago. I was laying on the back lawn while my 82 year old mom was working in the yard. Her back door neighbor noticed she needed some help. He came right over and took care of the chores. Feeling really stupid that the neighbor was thinking my mom had a pretty worthless, lazy daughter, I piped up and told him of the problems I was having. He is ahead of Primary Children's Med. Center. Anyway he said, I'll bet you 90% it is your gall bladder. I told him that I had had every test in the book but not one for that. Because of him and the great diagnostician he is, and being at my mom's that day, I believe I am finally going to be well. And I don't believe it just happened. Dr. Clark just "happened" to have that week off.

My 82 and 85 year old parents brought dinner out last night. How I love them. I have said over and over again how much I love them. You never get too old to not need your parents. I have never known anyone with the honor and integrity of my father. My mother is truly an angel who gets more and more angelic each day she takes a breath. It has hurt them so, to see their baby daughter suffering and feeling so helpless. I know how that feels.

I am so overwhelmed with the love, prayers, blessings, fasting, and everything else that has been done in my behalf. I am a very blessed woman to have the friends, neighbors, and family that I do. Thank you all. I am going to be running by the end of the summer! (K, maybe only a jog!)

Relief on it's way?

It seems as though the problem has been my gall bladder all along so I am saying bye bye tomorrow! I am having it taken out. I am going in with high hopes of feeling much better post surgery. I might have surgical pain but that is very do-able compared to what I have been feeling.

There is the issue of pain management afterward. I let my surgeon know the hard work and great strides I have made these almost 9 weeks. I am not about to undo it all now. I could be in some sort of pain for maybe 2 days but no longer, or nothing that OTC's can't handle. I will have Ron close by post surgery as I will be groggy, so that he can yet again emphasize the importance of not prescribing narcotics, or at least not more than 3 or 4 pills, or maybe 2-3. The doc said I would probably need something the first day or two.

I have such high hopes of everything being ssoooooo much better by the end of the month, maybe even working out again. But if this process has taught me anything, it is that I know nothing. I'm just hoping and praying.

Wish me luck!

What to say

It will be 8 weeks tomorrow. I should be incredibly happy. I would like to feel like I have, or am, conquering the world. I have felt like that before, but not in a long time. I wish I could say how much better my life is, how much better I feel and how I am working towards goals I have had for a long time.

But, I don't know what to say. I feel like I felt better on pills, that at least I had energy to get things accomplished, that my family had a mom a lot of the time, that I was able to tend a lot of times, that I could cook and clean all day if I wanted to, that I could go to a job and come home and do mom kind of things, that I could go out with Ron and Curtis to a movie or dinner, that I could spend time in my garden, that I could go visit Chel and see how she's doing. I worry about my Chel so much.

I can't and won't go back to pills. I have gone too far and I would have to do it all over again. I think it is much like divorce for a good friend of mine. In recalling the marriage gone bad, all she saw when it was over were the good times. Her ex was a toxic jerk. I would have to remind her every now and again. I think that is the way with pills, especially now that things such as health, are not so good.

Time goes so fast. I can't believe it is August already, even though the summer has gone so slowly in many ways. I know that I will get better, that I will be able to do the things I dream of, that I will be not only back to normal, but better than I have been in years.

I am glad it has been 2 months, though it seems that my resolve has been lacking lately. I know it will be 3, and then 4 months before I know it. Curtis will be back in school. That makes me sad. I love having him home. I always hated it when my kids went back, even after Christmas break. I loved having them home with me. I loved/love being a mom. Another topic for another day. I'm rambling. blah blah blah.

More tests tomorrow. Yipee!

My favorite time of the year

I went for a scope and biopsy of my stomach yesterday. It will take about a week for the biopsy results to get back. Otherwise, the doc just saw an inflamed stomach, or lining. He was in a big hurry and I was groggy so I'm not exactly sure. He now wants me to get a CAT scan. I don't want to. I've already spent too much money as it is. I think I'll just take yet another medication I was given and see how that goes. This is getting old and really getting me down.

This has been the summer of the couch and bed and TV. It has been hard for me to stay positive and up this last couple of weeks. It seems as though I lied on my last post. I want to be at peace and hopeful, so I tell myself I am, you know, the ole' "fake it till you make it'. I am trying really hard to fake it. Maybe then I'll make it. Too many pressures of life it seems and I can't do anything about any of them. Too many worries.

Curtis is in a community play that keeps him busy. And of course being with friends as well. Ron is busy with work and having a lot of fun training everyday for a triathlon. He got to swim the course in Daybreak this morning and loved it! It brought me back to the days when I would come home high as a kite after a great run. I'm glad Ron and Curtis are busy and happy with their own lives right now. I'm glad they aren't home much, as I hate having them see me like this.

l'll be glad when this summer is over. It isn't what I expected but I hope in looking back, it will have been one of much personal growth. Right now it is just about endurance. I'm pretty good at enduring. As a good friend and neighbor said, Just pretend you are in the last 6 miles of the marathon. I agree. Maybe hitting the wall as well. I've hit the wall, now it's time to keep running through it.

Fall has always been my favorite time of the year anyway.

My Little White Companions

It's not uncommon to find pills around here and there, even after you think you have gotten rid of them. I have found them in my closet, in pockets, in my purse. Only about 3. Today I got up and thought I would try on some jeans. I have lost about 25 lbs. Not too bad for just over 6 weeks! Anyway, as I reached in the pocket, there they were, another pill and a half, my little oval, white companions. You see, they have been with me for many, many years. I'm feeling like I should say they were hard to give up, that I was tempted for just a moment. But they weren't, and I wasn't. I didn't feel one way or another. I should maybe curse them, or yell, or stomp and scream, I don't know, just something to show how I hate them. But I didn't. I just ceremoniously flushed them down the toilet like I have with the others I have found.

I don't feel conflicted, or at war with myself anymore. I am not churning and anxious about what the next day has in store. I don't have too many expectations. I am not on a timeline anymore. I don't feel disappointment and regret on choices I have made. I am who I am, and I will be stronger and better.

I am slowly getting to a place of peacefulness and hope.

By the way, Happy Pioneer Day!

Happy Birthday My Sweet Sister

Today would have been my sister Sue's 57th birthday. She passed away very suddenly 5 years ago this August, the 9th. I've been thinking about her a lot lately. As any anniversary of this sort rolls around, thoughts of good times past seem to occupy one's mind.

Sue was one of a kind. When she entered a room, everyone knew that she was there, the party could start. She made the best potatoes, the funeral kind. She always had the best holiday accessories from sox to goofy jewelery, with added hat, scarves, or whatever else it took to celebrate. If Sue had something on her mind, whether appropriate or not, she would bring it up. She didn't believe in, or have, many filters. I think we were all the recipients of that at one time or another. She had a heart as big as the world. If someone needed a place to stay, she would offer her home, even if she hardly knew the person. She had many "strays" living with her on and off, and didn't charge them a dime. She would have given the shirt off her back if someone said they needed it. She had unconditional love. She displayed that greatest of all loves, when she gave up her baby daughter for adoption. She wanted her daughter to have a mom and a dad. I hope I get to meet Joy someday to tell her about her biological mom. Sue never stopped loving Joy, or thinking about her.

But more than anything, she loved children. She would be the first to offer to babysit even if you didn't need a babysitter. She would be the first to see the babies at any family gathering, sometimes irritating the heck out of them. She would flip them upside down and then onto her shoulders. I could never do that.

But her greatest love of all was her son Ryan. She adored him! She lived for him. When life got too big for Sue to handle, she just thought of her son and he gave her strength to keep going. Ryan was just weeks away from having his first baby, Sue's first grandchild, when Sue died. It often broke my heart that she didn't get to experience in this life the one thing she loved more than anything, babies, and her own grand babies.

I miss you Sue, but I know that you are doing great! I KNOW that, and I know you are happy and at peace. Knowing that, brings me happiness and peace for you as well. HAPPY BIRTHDAY!

6 Weeks

It has been 6 weeks today. This is the longest I have made it without pills in a long, long time. It feels good.

It feels good, but I don't, not yet. It isn't withdrawal anymore. That was over a while ago. I am having major stomach issues. I think I know what it is. I had something called H pylori a few years ago and the symptoms are exactly the same. It is really painful. It hurts if my stomach is empty, it hurts if I eat. It is bloated and nauseated all the time. Funny how I am saying "it". I don't like to think that my stomach is a part of me right now.

I have a hard time staving off discouragement, even depression. It seems they want to be part of this whole process. I don't like these companions. It makes me think of people who are chronically ill. How do they do it? How do they remain positive and productive? How do they keep from just giving up and spending their days in bed? What makes them keep going and doing, even if it is just getting dressed everyday?

I was asking Ron how he did it when he was so sick everyday, for years and years. He replied that he never lost hope. During really hard times, he hoped that the next day would be better, he hoped that he would not be in a wheelchair, he hoped he could muster up the strength to make it to his kids events. Hope, hope and hope again. With hope comes faith as well.

I have hope and faith that the days will be better. I am not on a timeline anymore. I am happy to take this one day at a time. Maybe today will be better than yesterday. Maybe not. Maybe tomorrow will be better than today. Maybe not. Maybe this week will be better than last. Maybe not.

Through all this, I can't help but feel so grateful. Grateful for the most amazing friends and family. Friends that I haven't seen or talked to since high school have left amazing notes and words of encouragement. Neighbors that have come and planted flowers without being asked. Friends that have given blessings and offered prayers. Thank you all so much.

I have the most amazing family ever! We have been through so much. My children have all had a lifetime of struggles, experiences that have made them who they are, from a very young age. My mom and dad are true champions of unconditional love and support through some very difficult things. I thank the good Lord above that they are still with me.

I can't say enough about my sweet husband. We will have been married 32 years in a few weeks. Neither one of us knew what we would have in store. It is a proven fact that most marriages could not survive a fraction of what we have gone through. I am so humbled and grateful that we found each other. He is such a great man with so much to offer. Thank you honey, for all you do and are. I'd be lost without you! We are in this together and knowing that gives me strength and hope.

I'm So Proud!

Ron came walking in the house after work yesterday and said rather sarcastically, "I've never been more proud!" He had something in his hand, When asking him why, he gave me a letter and a certificate from good ole' Daybreak whomever, that said we had been nominated for Yard of the Month. Just nominated, not elected. Oh what joy! What pride! What accomplishment! All my gardening dreams had come true with this one, well two, pieces of paper! There is nothing left on my gardening "bucket list" to accomplish now. The water feature I want, the pergola I want, the big backyard shade tree I want, the awning over the back porch I want, the hanging porch swing I want, the fire pit I want, all just so I can win yard of the month, I don't need anymore. I have been nominated! Now, what to do with the certificate of accomplishment. It is so official looking. Do I put it on the refrigerator? Do I frame it and hang it on the wall? Do I put it in my notes of "What to read at mom's funeral" in case the kids can't think of anything? Do I blow it up, make a banner out of it and fly it from my home instead of a flag?

Just so you know, gardening is my other addiction. Any money I can get my hands on goes to flowers. If there is ANY dirt showing, I need more flowers. If I walk by someone elses garden and they have a flower that I like, I want to sneak in the middle of the night and dig it up, steal it if you will. If I walk by a park that has something I like, you guessed it, I again. want to steal it. When I walk into a nursery a sensation that I can't control floods over and through me. I can't control myself. Before I know it, there are hundreds of dollars of flowers, shrubs, bushes, anything, that suddenly appear in my cart!

My corner neighbor actually was nominated and WON yard of the month. They got a sign that told the world that they had won. I bet they got a certificate as well!

I just couldn't take it anymore. The sign showed up in my yard for a few days. What! I didn't put it there!

My brain drives me crazy!

I drive myself nuts! I can't turn off my stupid brain obsessing over stupid things. Dumb things like, should I move some of my flowers around. I shouldn't have gotten that color flower for my front porch. Why am I worrying about flowers now. The planting season is over. It is never over. I hate that I have an appetite now due to the prednisone I am on. I would rather keep not eating and loosing weight. Wait, I should be happy. That means I am finally getting better. Should I go to a support group. I don't want to go to support groups. I hated them in the past. What would be different now. I am different. I have changed. I don't know. I can't sleep. I can eat. Crap. I hate that I can eat. I want to exercise. Now. I don't want to keep driving myself CRAZY! Why did I spend so much time in the sun when I was young. My skin is looking so old. Too many age spots from sun exposure. How did I let myself get this way. How can I pull myself out. How can I finally find peace and self acceptance. Maybe just the way I am. I'm so glad I'm finally off pills. I am happy I am finally seeing improvement. Slow but sure. I miss not tending my g-babies. Why can't I remember anything anymore. Probably because my brain is too busy thinking/worrying/obsessing over stupid things! My body still isn't working right. It's only been just over 5 weeks. Be grateful. That's right. Be grateful. And be grateful again and again and again. Maybe I should fill my brain up with gratefulness. Whenever I think a negative thought I will try my hardest to force it out and replace it with 10 positives! Yeah, that's what I'll do.