On Any Given Sunday with Crohns & Cushings

 

"I imagine you don't want the sacrament?"

Dad asked as he opened my door.

 

Face planted into my bed,  I focused on breathing through the feeling of a knife stuck through my sternum and driven into my back. For a few days I have had a reprieve of being shot through the chest but now, tapering off prednisone after only a few days stint up higher, I feel the pain of the esophageal stricture. The one that they just opened up and was my Christmas present.

 

Oh, the relief at first even if it needed to heal!

 

The closing off of my esophagus seems to be the addition to my family of  health faulures due to prednisone. Or Crohns. Or Cushings. Or whatever.

 

The air is cold in my room right now and snow has been falling steadily. It should be a time when J. and I are rejoicing, preparing to head up to the hills and let him ride.

EVEN he has been affected by the weather and his lungs have given him a nice hacking cough the last three weeks. Thanks to rescue inhalers and such we are trying to "get on top of" his asthma.

What is the deal with our lungs?

 

Back to the sacrament........

 

"No, I don't feel like I am presentable." I replied thinking of the mismatched greens I was wearing, thick wool socks with a funky design, and a merino shirt under it to wick the sweat away. I should have walked upstairs and sucked up my pride.

 

The truth was, I wished I had a straw I could extend up to the living room and sip the sacrament down. It sounds irreverent or possibly a Dr. Suess'-ish lazy way to get it, but that is how I feel.

 

The three days I kept my busy mind on some crafts and accomplished a few things like learning how to make these little fairy dolls out of craft wire and cross stitch floss.

 

A tutorial on Youtube of these fairies is by the Untidy Crafter or something. She does a good demo and I need to learn how to do the hair a bit better. The red head still needs a salon visit. Their cute if you have little girls. Or nieces. . Just use old flower petals for the skirts. Pretty cute idea for young women project too.

 

Anyway, mom shared some of church with me and it was touching. I wish I could have been there.

If you are reading this and are in my ward, know I am thinking of you and hope the best.

I had a friend perform in sacrament meeting and she was really worried all week that she would give a "Good" performance.

 

This gal can play immaculately. I would have settled for a B performance if it were me doing the performing but was touched that she would put the hours of practice in and the worry.

 

That is what people who love the Savior do; they give their best.

I hope that I am doing that with the time I am given. A lot of it is via letters ( a lot unsent yet)

and emails. I know a lot of women in my ward are going through their own personal trials and I feel for them.

 

As some get to stages of a situation that I have been along, I squeeze my eyes tight and imagine to that moment when I went through it and hope that they can hold too.

 

I'm grateful for friends and family to talk to as I go through my trials.  A lot don't have a big family or support system. It is crucial when you are dealing with health issues. Don't be afraid to ask for help. Write down what helps and what needs to be done if a crisis hits because sometimes you yourself can forget what needs to happen!

 

Do whatever you can to stay positive. I think I read on Addison's cancer page that if "we knew what ONE negative thought can do, we wouldn't even think it."

 

 

that kid is so cute.

 

He makes things to help support his ongoing trips to the hospital and I love the necklace he beaded for me.

Another hero for the books. 

Adrenal Insufficiency and December Re-do Update

(This usually applied to me and J. but this last year we slept in!)



For those of you coming into the picture of me trying to "Re-Do" December here is the update:

Allowing myself to rest  from the mad dashing of trying to pull off Christmas after the flu and tell myself I had

 

JANUARY

 to do what I needed; melted the pressure away. Along with stress dosing prednisone. You see, if your body goes through something traumatic or even happy, it uses cortisol. Mine has been synthetically made for some time and so it couldn't handle the flu.

I have no idea why I didn't clue into this earlier, when my body couldn't do what was needed. Most can't when they have the flu, but this was a double whammy.

Once I got the balance- I can't tell you how wonderful that day was and how much I enjoyed being able to easily shower, run errands, meet people and talk.

 

(The flu made it hard to get out mom's villages)

 Take J. to stores and do some much needed time out

 

together.

The sun was even shining for us! It was bitter cold but we couldn't care less in our toasty car with the heat up and mittens on! I had them on and I felt grateful.

 

 (However, It was sad that people turned their lights off - even some did before New Year's Eve!)

My body slowly healed from that awful flu over the designated Christmas day.

And so I have try to pretend January is December. I have to admit that it is hard to feel the same way that the special month of December brings.



(I have resorted to reading some picture books with J.- there is nothing like reading a picture book, no matter how old you are.)

We can carry the spirit of it with us but there is something about the month and everyone sharing in the same spirit that makes December! So January has to be January.

(Like this guy..... he comes in December and brings the magic! You can't fake it!)

Christmas music has played, I wrapped some gifts that didn't get wrapped, and I started in with the movies, I shopped the sales which helped to prepare for next year.

I have made a point to watch some good, old fashioned movies with Jaden. However,
I lost J. about ten minutes into the movie:

The Sound of Music.

The hills were very much alive with me cajoling him to come watch but, alas, other things online won out and so we watched those together. (Studio C is a great family movie.) Which is the point; spending time together talking and such.

As I have celebrated Christmas- backwards, I actually have been putting some things away; trying to organize. No one could tell if you weren't me but in doing so, I have tried to encourage J. to streamline. On one particular item, he came out with the truth.

"I don't want to give those away! they are a memory. "

 

Holding the special basketball shoes in my hands I was transported back to that day when he opened that big gift box; to the months and days leading up to that gift. In my effort to 'give back' like we had been the recipients, I was, in effect taking away something quite special to him.

Readers, they ARE one of the best Christmas memories. They weren't ordinary shoes. He's had plenty of those and they are easy to pass along to family members when he has grown out of them. But these shoes came at a magical time in our lives.

 

A difficult time in our lives.
Which made them that much more special. We will hold to those.

 

 

Mary, The Mother of Christ



Henry Ossawa Tanner: The Annunciation

 

So today's attempt to make January go back in time to December (since it was robbed from us by the flu), I stopped researching  glucose conversion and keeping your toes warm to studying about Mary.

The mother of the Savior.

After doing some laundry in between the moments of taking down some Christmas, glucose conversion, etc.; I came across an article about Mary which instigated the research deviation

"Oh perfect, let's start with her!" I said.

Mary was asked  if she'd be the one to carry the Savior. That had to be a heavy question..

Here is part of the article, with my interjections, because I have to be honest- I feel like the last two weeks have been pretty much filled with, well, Jaden. We had a good two week break. Despite the flu ending and the wrap up of that- it was enjoyable to have him home, his friends come over and laughter ring through the house.

I could have done without one of the Nerf guns he likes to just cock over and over, but for the most part it wasn't too big of a battle.



The sacrifices we make at this time of year, they don't have any idea about if we are trying to bring them the meaning of Christmas: The Great Surprise that God has in store for us if we just

BELIEVE.

Right? It has to be a surprise. The magic.... is real. The gifts of eternal life are real. And we have to wait in order for that morning to see what He has in store for us. And it can be great. No matter what you give. Or the lack thereof. He has to come...... whether now or later.

(In the Arms of Mary. Simon Dewey)

 



For Mary, it was in 9 months. Not a lot of prep time for bringing forth the Savior of the World!

Back to the article on lds.org.....

'despite the lack of information about Mary, there is much to be gained from studying the few recorded words about her; and in doing so, we can gain some insight into how we might approach some of the questions facing us in life.
 

For example, one of the pervasive decisions we face is the choice between self-denial and self-fulfillment: do we seek first to serve others, or do we try to satisfy our own needs?

For some years, popular trends have focused on the rights of individuals to “do their own thing,” seeking their own happiness.


(scenes from the nativity movie on lds.org)


" Many people see achieving personal goals as the ultimate meaning of life. Some psychologists support this emphasis by pointing out the negative effects of the “martyr complex” and by asserting that a person becomes a nonperson if he never does what he wants to do.

In sharp contrast are the ascetic practices of self-denial focusing on sacrifice for other people or causes. For those who pursue this course, the individual becomes less important than the group or the goal: there is something higher than self to live for.

 

Most people do not live either of these extremes. They try to pursue a course which neither totally denies themselves nor shuns service to others. At some times it seems appropriate to them to try to fill their own needs, and at other times it is important to sacrifice for something else.

 

(sadly, this paper nativity wasn't brought out this year! But I love it! Santa/winter elf made the shelf, however.)

 

Reading about Mary and the choices she made suggests an entirely different approach to the problem of choosing between self-denial and self-fulfilment. Suddenly, both choices seemed to carry with them too much emphasis on self.

Mary focused on God, not on herself, putting her faith in him rather than in her own abilities. Rather than seeking to fulfill herself, she consecrated herself to fulfill the will of God. But in making that choice, she did not deny herself: God fulfilled her needs better than she could ever have fulfilled them herself.'

This can be hard as a new mom. Do you let yourself take a potty break and let the little one work himself into a two hour crying tantrum? Or just let him cry. Answer is the latter. Do you take a shower for the same reasons? Or take a nap cause he's napping. That's debatable.
 

'From Mary’s experiences as recorded in the scriptures, we can identify four steps that may be useful in trying to develop her qualities in our own lives:

 

(what Nativities are your favorite? It would be so hard to choose, wouldn't it? Lots of artists out there with amazing talent.)

 



First, discover God’s will. To do this we must become aware of his commandments. Mary was already aware of the commandments and promises God made to Abraham, Jacob, and David centuries before (see Luke 1:54–55); and when the angel was sent to her, her sense of historic continuity was extended into the future as well, as she realized that her unique mission would influence all the children of God born on earth: “For, behold, from henceforth all generations shall call me blessed” (Luke 1:48). Likewise, we too are promised that we can know God’s will if we are willing to follow his counsel that we pray, study the scriptures, and learn how to hear the whisperings of the Holy Ghost (see D&C 19:23).

 

Second, we must develop faith in God. Mary was declared blessed for believing that the Lord really would fulfill the things he had told her (see Luke 1:45). We too must develop a sure knowledge of God’s perfect love for us, and faith in his ability to choose for us the path that will lead us to maximum possible joy.
 

Third, we must submit to God’s will. Mary’s expression of this willingness to submit is beautifully direct: “Behold the handmaid of the Lord; be it unto me according to thy word” (Luke 1:38). This reminds us of the words of her son as he was about to do the most difficult thing ever done on this earth: “Not as I will, but as thou wilt” (Matt. 26:39).
 

Fourth, we should praise God. This step is much neglected, but Mary’s example is again most beautiful. It reflects not only her own outpourings of praise for God, but also her knowledge of the praises sung by the prophets and kings before her:

My soul doth magnify the Lord,

And my spirit rejoiceth in God my Savior.

For he hath regarded the low estate of his handmaiden:
  

For, behold, from henceforth all generations shall call me blessed.

For he who is mighty hath done to me great things;

And I will magnify his holy name,

For his mercy on those who fear him

From generation to generation.

He hath showed strength with his arm;

He hath scattered the proud in the imagination of their hearts.

He hath put down the mighty from their high seats;

And exalted them of low degree.

He hath filled the hungry with good things;

But the rich he hath sent empty away.

He hath helped his servant Israel

In remembrance of mercy,

As he spake to our fathers,

To Abraham, and to his seed forever.

(JST, Luke 1:46–55).
 

We often hear expressions of thanks and gratitude given to God for his blessings, but perhaps not often enough do we hear praise for his greatness and goodness. The best examples are the outpourings of praise and adoration that characterize the feelings of those who have been closest to the Lord, who have known him best.
 

To focus on God rather than self by seeking to know his will, having faith in him, submitting to his will, and praising him can result in an inner peace and joy that can sustain one through any pain or sorrow.

Although Mary devoted herself to God’s will, she was not guaranteed comfort and ease in this life. In fact, Simeon prophesied to Mary that

“a sword shall pierce through thy own soul also”
(Luke 2:35).

*It must have been one of the most difficult things imaginable for her to watch her son give his life on the cross. And all the other times he was treated harshly. Truly we feel for our kids.



 

But Mary’s anchor was not in herself or in any mortal, imperfect thing. Her faith was in God. Such faith brings the confidence and courage to accomplish missions that otherwise might be too difficult to bear.

In a world where many people see the major choices of their lives revolving around the question of living for the moment (self-indulgence) versus living for the future (self-control), we can, as Mary did, gain a sense of heritage and of eternity which can dispel the selfishness that overshadows the age in which we live.

*had a thought on the living for the future while having certain conditions or even the flu. hmm.

 

"Mary lived a pure life, a life so pure that the Holy Ghost could come upon her. She had faith that “with God nothing shall be impossible” (Luke 1:37). She was willing to live her life according to God’s plan. For these reasons she was able to be the mother of the Son of God, the mother of our Savior and Redeemer. Surely she is blessed, and through her we have all been blessed."

Sheryl Condie Kempton, mother of five, is Primary president in her Provo, Utah, ward.

*I need to go back through and edit this piece but I wanted to get it out there. The pictures are lovely.
And I need to get the artists to the right picture. I apologize for not doing it before hand. I don't want to get too far behind.
 

Introducing Some New Friends Fighting Leukemia

The Clarke-Kleinhans ~ A family that has been touched by leukemia and has been an inspiration to me lately. ~

YAY!

 

You Readers know I love to make new friends! It's harder to do when you are not out and about- so when I came across the cutest family via my email, and one thing led to another- well, it was what I NEEDED; to care about someone and share their burden. Sad, it has to come about in this way but that is how it goes sometimes.

First of all a hospital in Seattle sent me an email. They told me that immunotherapy had helped find a cure for nueroblastoma. Some of the very hideous meds I have been on have helped pave that path.

YAY, again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was really sick and sick of prednisone so, actually, when I read the news- I said in my mind:
"Dang good thing something good came of that."

Then I started to watch/read the stories of kids with cancer and of course kept clicking and remembering names so I could face some infusions. And that's how I came across Addison and his family. (Phoebe was on my mind a lot.)

Then I facebooked Addison cause I found out he made things to help support the trips to the hospital.





(like this necklace)

(I love a good entrepreneur so I researched more and found that even his SISTER started up a non-profit called Heartfelt Hugs for siblings that deal with the depression, trauma, and new "role" of being the sibling of someone with cancer.



Now that's two for two smart kids in this bunch and they had me sold. Their mom, Sarah, home schools these kids and thy are impressing me quite a bit. From making homemade jam, and spaghetti sauce, to earrings and other jewelry.

(Sarah is a model. I just learned this. )

Their Dad- he works hard at- working hard. He looks cool. I better find out what he does.  I want this family to get through this! Since Ad was 5 and he is now in 6th grade, he and Madeline and their parents have been fighting.

So Mad started out with her events and helping siblings of those who with Cancer. (she walked into a hospital and saw a huge box full of toys for the sick kids but there weren't any gifts for the siblings- they have special needs too!)

So as I read through the face book pages there was one picture of Addison looking at the sunset. He had told his mom to STOP! while they were driving so he could take in the sunset. I enjoy them too.



He then told her she needed to slow down and really look at things. And then he had a hard time back in November and asked his FB friends to look at something until it made them smile. Then take a picture. Then send it to him.

I did the first two. I had just finished a VERY hard day at the office. (hospital.)

 



(Addiso with his 'worry stones'- sounds like a good idea. Do you just chuck these, Ad?)

 They had stuck me a lot and veins rolling, ducking, playing hide and seek, obeying and then blowing. It brought me to tears. So I thought of the names of some of the little cancer kids.

"They are so much tougher than I am." I thought.

After I got into the safety of the car, I remembered a volunteer was holding two gifts for me! I had to have mom get them! But one was for her. So I gave her my wallet, she ran inside, and she was going to get me a drink.

I recalled Addison's request. So I stared. The glass on the hospital window was covered with white trees, mountains, and elk. It reminded me of taking J. skiing.

 



Which actually started to hurt cause it wouldn't be happening soon if the infection held on like it was.

Snow began to fall. It was beautiful. I wasn't smiling yet. But not upset. Then a young couple in love came by, and the way they were gushing over each other- made me smile! I couldn't take their picture! That would be stalker-ish and anyway, it was in a pocket somewhere.

Mom, came back and told me she closed her eyes while purchasing the gifts- and when I couldn't open my water or whatever I asked her to open it. She couldn't.

We started laughing so badly. I recorded it. -k I am tired. More soon.

'Oy, to the World'= December Re-Do

 

 

I am redoing Christmas.

 

(not the gift part. More like an advent do over. Really emphasizing the Savior's birth. The month of December is what I want to re-do. )

why? 

the Flu

 the month of December literally felt robbed! Nothing but enduring the illness with a compromised immune system could take place. I was seriously worried about being able to do something for my J. for Christmas.

And to get the gifts and letters out to those that are on my 'list.' Which I made small this year- and still!

But since we were sick, that list has grown because of all the nice things people did for us.
I am in some serious debt to others.,

You won't believe what happened in the days leading up to the big day. I will spare you, except for a few things since it is kinda funny now, that some time has passed between the moments of listlessness due to coughing up lungs from The Flu. (Get your flu shot!)

(this was just plain funny. That elf is creepy... Way to save us Buzz! Reminder of when my

J. loved Buzz .)



I still can't get over the fact that this was a record year for us receiving goodies, treats, and gifts. Along with visits from friends and neighbors.

The door bell would ring and someone's homemade fudge saved me (or J. ) in the knick of time.

For some reason I thought everyone in the world was also suffering with the flu and was not able to bake.

 

Boy, was I wrong.

So many of you thought of us and I thank you for that.

Since I did get a head start on decorating downstairs, it wasn't a complete fail. I put some dummy gifts under the tree to throw off the scent of Jaden's Christmas gifts.

Like using this lovely creation: The Bowdabra. * for half off with a coupon to Joann fabric.



When he asked to open a gift early he opened one that had socks in it. I told him to choose wisely!



I enjoyed the bowdabra *a special device for people who can't make bows. before I was sick and went to town making, well, lots of bows.

They were huge. Professional looking bows. On gifts for a boy. Just to match the tree:

(over the top bow just to see how big I could make it and overwhelm a package......)

And then I decided that boys like to open things that require the pocket knife. So I used duct tape.

 I even created a duct tape bow.

except his was gray. and less Martha Stewart

See:

One gift was a crate. He had to open it with a crow bar. It wasn't that big, but it was a mancrate full of survival gear. I was in an infusion and worried sick about what to get him so googled: gifts for young men and this site: Mancrates comes up. Mainly things for drinking aged, jerky eating folk.

He has braces and loves jerky. That would hurt his feelers, am I right?
 

And he needs it.

Heck, I may need it and actually grabbed his protein bar. So if he is out hiking he will have to forage for himself.

 

Another sad fail was a letter sign I had started last year. I even bought the white paint some time after Christmas to spray paint the letter, 'J.' To complete the saying "Joy" for this year's mantle.

This was Ugly Sweater Wreath:

 

 

Well, the tip of the spray paint got ruined somehow and on the beautiful day that I went out to spray it, I found out it was defective. Great. So the whole month I just left the yarn covered, 'O' and the white spray painted, 'Y.'

So it has sat on the mantel and said "OY"   to everyone, including myself every time I went in there. So maybe this month, I will casually replace the spray paint or grab some white paint and finish the J. I hope the J is in the place I put it.....

Oy, to the world, Readers!

A trip to Wal-Mart, actually a trip anywhere except the bathroom, was out of the question with this flu pf 2015.  It was a flu that hung on for three weeks. For some it might be a mere sniffling of the nose but for other it could be one emblazoned in the backs of their minds for years to come.

 Another fun thing to do for the month of January to re-peat December is decorating the small, pathetic pine tree I have used as a seasonal tree. Before the dreaded flu hit I slowly hung each ornament as I added ribbon to coincide with the teal, black, and seafoam color scheme.



Without my knowledge, my Christmas Carol tree took on a "steam punk" look and it was quite cute.
Due to the last minute wrapping of J's gifts- which would have been done in baker's wrap and twine anyway, somehow duct tape or twine was intertwined with the lights.

When J. went to grab his first gift- he pulled it toward him and the tree just fell. Yes, Reader, the glass decorations tinked against each other and it fell down on the ground.

 Sitting in my chair, I was kind of stunned. I was recording it. and so I was mildly engaged when I had that process. But when I told J. to just stand it back up and unwind the gift from the lights- it looked about the same.

So that was funny after I had time to blink a few moments, check my ornaments, and then figure I should just do plastic from here on out!




Here is an example of something cute you might put on a gift to a neighbor or decorate your gifts under the tree. You'd have to live in a very cold place in order to have time to do this sort of thing.

Duct tape is a way faster gift tag. Pull, rip, place, write: To: and From: Real simple.

I skipped tags completely and went directly to using a sharpie to write whose it belonged to.

 

Actually, Idaho has been quite cold and wINDY lately. I tell ya. That wind can really make a person's disposition change.

 

So what is the first thing I did to Re-do?

I read a book. The book from last year called: A Christmas Wish.

 

I plan to read A Christmas Carol and make Jaden read along.

 

And I sat by the Christmas tree upstairs and really tried to feel the magic that comes with the anticipation of Christmas.

 

Years ago I recall feeling very excited and full of hope and anticipation. I can't recall which year it was but it was before the dawn of shingles and the road to being on prednisone a very,, very long time.

This year, with the flu,  (and Crohns and Cushings, )it made it a bit tougher and I had to really use all my energy to drag out some décor to help J. feel the Christmas spirit. the sign that reads:

 

BELIEVE

to the front porch.

 

The bottom "E fell off in one of our Idaho storms. So I had to nail it on there in a Dr. Suess style and move it under the eave.

 

I decorated the window but of course we didn't  have the light up, so it wasn't obvious if you were riding a horse by it.

However, mom pulled off decorating the tree after J. set it up, dad put the lights on, and she put the ornaments on while Fred Astiare movies played in the background.

 

The nice thing about January being December is that everything is 75% off. So I can replace the lights that died toward the end of December. Also a cute roll of paper. I got an advent calendar to help us keep centered on why I am doing this.