Let Them Be Little

DID YOU KNOW

THAT MAY is 'Celiac Disease Awareness' month (in several states)?

Neither did I.

But I do now.

It seems fitting that I, the girl who was born on Labor Day, would become aware that I have celiac disease during celiac disease awareness month.

The biopsies confirmed that.

They also confirmed that I do NOT have cancer.

Such a relief.

We are grateful.

Celiac disease is something I can learn to control; I have already started learning a lot about the disease. But I have a lot more to learn in order to get healthy.

I have been told that gluten is hidden in a lot of things, not just food but in vitamins and supplements, prescriptions, and in a lot of things you wouldn't think would contain gluten. So I will need to constantly check all labels and ask a lot of questions in order to get healthy and then stay healthy!

My brain is already in celiac overload. (So is the rest of my body, apparently, ha!)

Education and information are like a shield and sword that will help me fight the ill effects of the disease.

Well, that and

100% compliance to the celiac diet is a must. (I can't even tell you how many times I was told that; it's important and it must be hard for people).

Which is fine with me. I will gladly trade food for health.

There is a good possibility that once I am able to get the celiac disease under control, my lupus symptoms may also improve.

Wouldn't that be great?!

YES! It would!

 

IT'S NOT EVEN MOTHER'S DAY YET

AND ALREADY it's the BEST!!

"That's why I couldn't be happier..."

Jonathan and the kids really surprised me! Seriously surprised me with the biggest Mother's Day surprise, ever.

This morning, Jonathan left to take care of some things. He was gone a couple of hours, when he came home, I was laying down in bed (I had been up but needed to take a rest). He came to talk to me and was acting rather strange.  I asked why he was acting a little weird and he said his leg was cramping.  And he ran down the stairs...

I thought to myself, "Okay, well that was weird, I wonder what happened..."

A few minutes later, he came back up the stairs and said he had gotten me an early mother's day gift and he wanted to give it to me now.

Well, okay!  Who would turn down a gift?  Not me!

I sat up in bed and I could hear Smash coming up the stairs. Thinking he would be carrying whatever Jonathan had gotten for me (since Jonathan had a cramping leg) I turned to see what he was bringing...it was Nathan!

I screamed! Really.  I screamed!

At first I couldn't believe my eyes. I thought I was seeing Nathan in Smash.

When I looked at the proud smile that Jonathan was wearing, I realized it was REALLY Nathan!

It was absolutely the best surprise and gift ever!  I have all of my kids home for mother's day.

What a gift. They are and have always been the greatest gift I could ever receive.

Thank you for the sweetest surprise. I love you all!

That's why I couldn't be happier. This song (titled Thank Goodness) from my favorite musical, Wicked, started going through my head just after the house was filled with these wonderful people.

Since I will be soaking up as much time as possible with my family, I am not sure if I will get a Mother's Day post prepared for tomorrow.

Happy Mother's Day to all.  Most especially to our own mothers! We love you!!

LEAVE IT TO EMILY

to send me something like this:

(She's here with me and still sends me an email message when she wants to show me something, what a crack up!)

 

She is a firm believer in making everything okay!  (Click on link!)

 

(When you get there, be sure to click on the key).

THE GOOD

AND THE not so GOOD.

But mostly I believe it is good. 

The other day, I wasn't doing very well and I told Emily that sometimes I think it is easier to be sick than to try to get well. It was in a weak moment after lots of poking and prodding and bruising, etc.

They are tearing me down in order to build me back up.

I shared with my mom-in-law a couple of weeks ago that I envision myself as a phoenix rising from the ashes. Silly, I know.

Yesterday was one of the best days I have had in a long, long time.

Since I have not been able to take the iron, it has been nice for me to not have to be sick for the days surrounding those infusions. (But if I could take it, I would - it was helping me!)

In the morning, I felt terrible and thought it might not be a very good day. It had been a rough night for me, along with what I have going on we had some not too happy people in this house before we all went to bed. And that bothered me all night while I tried to figure out how to help hurt feelings heal.

Needless to say, I was wiped out before the day really began.  After the kids and Jonathan left for the day, I fell asleep. It may have been a couple of hours that I slept, I don't really know. But when I woke up, I felt better! There was an energy spurt welling up within me. It occurred to me that this energy spurt was significant and I should put it to good use. So, I got to work on a couple of windows (insides only) that have been bugging me and a couple of light fixtures. It made me so happy to feel that I had accomplished something! Something other that laundry...

Then I showered, laid down for a bit afterward and then went to see the doc.

The pathology did not come back in time for my appointment with my Hulk doctor; I suspected that would be the case. But that's okay because I see the GI doc on Monday and he will have results.

The iron infusions were helping my blood to build. That was good news.

We were very excited about that. I felt that it was helping, my head has been more 'clear'. My heart isn't pounding as hard as it was. Still dizzy and light headed along with several other things but it's getting better.

He was excited to let me know that my blood levels have come up out of the life-threatening range.

Thank heaven for that!

Now, he is trying to figure out how to get more iron in me without having the iron kill me...his words were, "I don't want to have you come out of a life threatening situation with your blood to kill you with iron."

We laughed a little at that but it is serious, darn.

Since I have gotten through the procedures and should hear back about pathology, he thought we would talk about blood transfusion.

Which he said may still be necessary. There is a lot to consider.

My body is still not able to absorb the iron from food and supplements and now that I have adversely reacted to the IV iron, he doesn't quite know what to do next and said he would do some research on the best way to get the iron into me (while keeping me alive).

He said while he researches other options for me, he will talk to the GI doc and see how long it will take to have villi return (so I can absorb nutrients again).

So, my job this week while he looks into all of this, is to keep building blood!

If it keeps building then I will build it on my own over the next months.

If it falls again, he will have me get a transfusion.

In the beginning, I was really hoping to build my own blood but after all that I have been through, I am not opposed to a transfusion. I know it would help me feel better sooner.

His findings in my blood go along with the early findings of the endoscopy, so they are pretty certain that it is Celiac Disease that is keeping me from being able to build blood.

Yet it is necessary to have the biopsy confirm - they say it is the only way to be certain. Apparently there are a lot of folks who should be tested for the disease. And there are many people who have self-diagnosed and believe that they suffer from the disease but might not and without a biopsy they can't know for sure.

As far as the blood volume goes, still not certain where, when or how it got so low in the first place. It is clear that I have been suffering from it for a long time. (I wish I could go back in time and fix this earlier, I believe it would have helped me cope better with some difficulties we faced a while back).

Anyway, we should have more answers on Monday or at least understand more.

After the appt. I got to watch Smash soar through the air. Love it!

Then I came home exhausted and out of it and feeling happy.

 

 

THANK YOU

to you, and you, and you.

There are several thank you notes I am working on at present.

They need to get in the mail!

Even though I haven't mailed out the formal thank you notes yet, I wanted to mention a few of the sweet thoughts that I have received from really sweet people!

And the list keeps growing.

Just when I am having a tough moment, or day, or something...a card, an email, friend, flowers, text or voice-mail will come that will completely lift me up! It's as if I get that special something just at the right time.

You are all so good to me. And you have obviously been spiritually guided to send something uplifting just at the right time.

Thank you.

This card was the first to arrive. And it came from a woman I have only met once, briefly. Her daughter lived with Emily last year and we met while the girls were moving in to their dorm.  We could not have known how close Mary and Emily would become through that time together, had I known, I would have tried to have a better conversation with her mother, Becki. Mary is a wonderful girl and I have been so thankful that she and Emily have become so close. In this case, the apple doesn't fall far from the tree. I suspect that Mary is such a sweet and wonderful girl because she is a lot like her mother.

Her mother read of my recent struggles on this blog and sent me the kindest note. It was such a thoughtful thing to do that I was completely overwhelmed and humbled by her.

You know, it is really interesting, every time I meet someone from Washington (the state), I feel a kinship with them. They too are from the Seattle area. Many of Em's friends from college are from Washington and she agrees with me, the NW holds some real treasures in their people!

Thank you Becki, when I am well and we have finally settled into a home here in Co., please bring your family and play! We'd love to have you!

A few days ago (not sure which day exactly, I was a little out of it), this arrived:

From a very wonderful woman. We have only met once but it was on a really special day, the day her son, Tyler, married my niece, Karen.

Jill is someone I feel that I have known for a long time and feel that I know her better than I do. I read her blog and keep up with her happenings and thoughts on life. She has raised 4 wonderful sons and has helped raise her 2nd husband's children too. She and her husband have a beautiful marriage and wonderful friendship. It's easy to know that by what she shares. She has darling grandkids and is a happy grandma. Her other name is Grandma Honey - now that's the sweetest name, ever!

I love this photo! Taken 3 years ago on May 1st in Fresno, CA.

 Thanks Jill, I have already started reading it and I am enjoying it a lot! You are so thoughtful, I wouldn't have splurged on a book like that right now, but it is one that I would have wanted to get for a fun read.  Thank you for thinking I could use a little lift and something inspiring right now.

 

Jonathan's parents sent me a card with one of my favorite poems on it. Thanks for thinking of me and for sending that beautiful card with the poem; I needed the reminder.  :)

I don't know how they remembered or knew that it was a favorite but somehow they knew. It is one I shared with my Institute class - I like it that much - only the best for them.  :)

They also checked in on Nathan this weekend and saw him face to face. They said he was doing great! I really needed to know that! Thanks for doing that, Ben and Joan! I was a little worried.

 

The Oak Tree by Johnny Ray Ryder Jr.

 

A mighty wind blew night and day

It stole the oak tree’s leaves away

Then snapped its boughs and pulled its bark

Until the oak was tired and stark

 

But still the oak tree held its ground

While other trees fell all around

The weary wind gave up and spoke

How can you still be standing Oak?

 

The oak tree said, I know that you

Can break each branch of mine in two

Carry every leaf away

Shake my limbs, and make me sway

 

But I have roots stretched in the earth

Growing stronger since my birth

You’ll never touch them, for you see

They are the deepest part of me

 

Until today, I wasn’t sure

Of just how much I could endure

But now I’ve found, with thanks to you

I’m stronger than I ever knew

 

THE PROCEDURES

WENT WELL.

A little discomfort afterward and very tired but I was in good hands.

Once we arrived at the hospital, the jitters of the previous days left and I felt completely peaceful.

Several biopsies were taken.

Tomorrow I meet with the hematologist (oncologist and internal medicine) doctor. I don't think the pathology will be back yet from the biopsies last Thursday, but it would be nice!

Next week I have an appointment to meet with the doctor (the boy doctor - he looked like a kid to me! I hope I didn't say that out loud as I was going under...it's the last thing I remember thinking!) who took the biopsies so he can go over the pathology reports with me.

He found scalloping on the walls of my small intestine and the villi were gone. That indicates celiac disease, another auto immune disease.

He feels that I do have that but we will know for sure when the pathology is in.

After doing some research on it, I can see how I would completely overlook the symptoms of that disease, if I do in fact have it - so many symptoms are like Lupus. The things I live with, have been living with for years, that are Lupus in nature, are not things that I talk to anyone about, it is just part of my life.

I am so thankful that we are getting closer to finding out what is happening. The more we know, the more we have found that this has been life threatening and I have been very blessed!

Since the villi in the small intestine are not there now, I am not able to absorb the much needed nutrients from food.  Like IRON! And all of the other necessary nutrients to keep this body running.

So far I have found out that they can come back but it takes a long time, not certain just how long yet but I am hoping to have question answered tomorrow.

Once they come back, I can begin to absorb nutrients again, like IRON! Which in turn will help to build up my blood. (Wouldn't that be great?!)

The question now is, do I wait those many, long months in order to try to get better, or get a transfusion and feel better sooner? How much longer can my organs keep working over time with a lack of blood?

Which would  be more healthy for me now and in the long run? To transfuse...or not to transfuse...

Also questions I hope to have answers for soon.

Still no clear answer on where, why and when on all of the blood loss...not sure if that will be answered with the pathology, or if we will ever have a clear answer.

My hemoglobin and hematocrit have come up a little with all of that iron, I hope I will be able to accept the iron and do it again...I want to be able to feel better (sooner rather than later).

This is a process that we have to go through but I feel like we are getting closer and closer to answers.

Once we get some answers, we can arm ourselves with information and education

and perhaps I can get well.

Oh, today I had to go get my blood drawn again. Emily took me, which meant she got to meet Banana peel girl (Erin). She was so excited to meet her; you would have thought Erin was a celebrity! When I introduced them, Erin said, "Hi! I'm your mom's favorite vampire!" That is true.

Erin took one look at the butcher job the nurse did to my arm last Thursday - yes I have a big huge bruise on my arm from the IV - and said to me, "I want names!" She was appalled that the nurse who gave me the IV would do that to me.

I didn't give her names but loved that she cares for me. She's a friend.

LOOKING BACK

Nathan and Emily at Grandpa and Grandma Rich's home, Spring 1994.

Having little Miss Em back home is a treat. There are many things she still does, or says, or looks she gives that remind me of her from many years ago. Our little Em is still inside our more mature, college Em.

Yesterday there was something that she did that is just SO her.

For my procedures, I cannot eat for a couple of days (and do some other lovely stuff that I won't mention here).

She was making a sandwich in the kitchen and I thought she would join me and eat it. But then she went missing.

I wondered what had happened to her and why she would leave.

Looking out the window, I saw no sign of her and Larry was still parked in his usual spot.

It seemed strange to me.

Where would she go? Especially with her sandwich in her hands?

I decided to check out the front door, as I opened it, there she sat on the concrete steps.

Sandwich, that she was trying to conceal under a napkin, in one hand and a book in the other.

She was acting so funny with that sandwich!

So, I asked her, "Are you trying to not let me see you eat that sandwich?"

Her reply, a sheepish "Yes."

She is such a funny little gal. I love that she is that thoughtful; she doesn't need to be (for me) but it is a wonderful trait of hers. (Next time Em, I can handle it...I'd rather enjoy your company, sandwich and all.)

It was a beautiful day! I thought that she had had a brilliant idea in going outside.

I mentioned to her that she could get the picnic blanket out of the back of Larry if she wanted to really relax for a while.

She declined and said she was fine on the steps.

Then she said, "This is where I sat and waited for Smash and Megan to be born."

"You did?"

"Yep, either here (pointing to the last step, the one she was on) or up there dangling off my legs, even though there wasn't much to dangle."  Ha, ha!

It's true, she and Nathan waited here at this home, with Jeanne, for me to have the younger two.

It was such a sweet thought and memory.

I'm glad she has those wonderful memories of this place where we have returned.

Another memory followed just after. Jeanne's fried chicken, mashed potatoes and gravy, I think she makes the best in the land! She would bring the kids to meet their new sibling and a plate of her specialty for me to eat. (After not being able to hold anything down for 9 months and then giving birth, it was the absolute best meal ever!)

She and Nathan were older than the picture I put at the top of this post when the other two came along but it's such a cute one, I wanted to put it on.

Speaking of Nathan, he had a little accident and I am worried about how hurt he might be.

He hit a parked car while riding his bike. He must have been flying because we are getting word back that it's a $1600.00 repair.

So, in order to cause that much damage to a vehicle, I really wonder what he looks like!

 

 

HAPPY TEXT MESSAGES

ARE THE BEST!

Text messaging is wonderful and amazing and quick and easy and (can be) non-intrusive.

Still, I'm an old-school gal in a lot of ways (I just proved that by putting old-school and gal in the same sentence!) and I think it's important to have real-live conversations with people.

But since I have been sick and it is hard for me to feel up to talking much, I have found a new appreciation for text messaging.

Mainly because of my niece, Karen.

She is a master text-er.

Her texts could not be replaced with a phone call - well, unless it was via Skype.

Because she sends me cute little happy thoughts with messages like these:

Just look at that cute little guy! My first great-nephew, Rich. Aren't they a darling pair?

Finals day for Tyler and Rich's first official campus visit!

See what I mean? Aren't those the best messages?!

I love them; the photos via text and the beautiful people in them!

Oh, and they celebrated their anniversary on the 1st. Happy anniversary!

REACHING NEW HEIGHTS!

Such an exciting day for the Smash-man!

He had a goal:

A new PR (personal record or as I like to call it a new PB - personal best!) of 11 feet which he had no problem making with his new 13' pole.

At first I worried about how he would do with a longer pole, one he had never used before, but he was on! Every vault, up and over, with precision and ease.

He was the last vaulter in the competition. The last man standing flying, so he got to go until he couldn't go anymore.

Everyone waited and watched as he caught his breath and rested for a few minutes and then he went again.

He broke his own PR with a vault of 11 feet 6 inches!

Talk about celebrations! 

Everyone was thrilled for him!

The vaulters are quite the little community of friends; they all root for each other whether they are on opposing teams or not.  The coaches root for the vaulters whether they are from their team or not.

It was so cool to see them all getting more and more excited as Smash raised the bar higher and higher.

 

He went for 12 feet (he could have gone up by the inch since he was the last one in the competition but he decided to raise it a half a foot at a time) but just brushed the bar. He was right there...so close!

Immediately after the competition, with a smile on his face, he made his way over to us and we shared our excitement. He announced right there that he has a new goal - another foot higher - and he would like to get it by next week! This kid is determined!

 Highlights of the excitement of the day are below:

He started at 9 feet:

 

9 feet 6 inches:

10 feet:

10 feet 6 inches:

Here he goes for his goal. 11 feet!:

Watch the coach in the purple shirt in the photos below (it's a treat!), he has been such a BIG help to Smash and he isn't even his {official} coach. The pole vault coaches are amazing! 

(These are a bit blurry, I was so excited that I was shaking!)

That coach can JUMP! His feet are nearly the height of the seat of his chair. Love it!

Do you see him laying on the mat? His feet and fists in the air?  Love it!

More celebrating!:

(I think this friend asked him to do a back flip if he made 11' 6").

 

 Going for 11 feet 6 inches!:

He missed his first attempt, just nicking the bar.

While he rested up, the kids that were waiting to see his outcome (by this point, the track meet had been finished for a while) played on the mat:

Ready to try again, his second attempt was RIGHT ON!:

And the celebratory back flip:

He went for 12 feet! He was so close but just didn't get it.

Stay tuned...it's his next goal, he'll be working hard to achieve it.

Brushed it with his hip.

 

In support (and celebration) the boys rush to the mat and tackle him. So funny!

SWEET(!) ON TRACK

This is worth reading.

 

We arrived at the track meet around the time we thought Smash would begin vaulting.

Some of the athletes were already vaulting but they were not yet at the height where Smash would begin.

As we were watching the others compete, we saw a group of athletes (from different events) from Fossil (Smash's hs team) talking in a circle. Smash was among them and I assumed they were just shooting the breeze.

While they were huddled together, the men's 200 began.

When the athletes running the 200 were on the other side of the track, the huddle moved to the track and each (random) athlete took their lane.

In lane 1 was a boy with Down Syndrome. He wanted to run the 200 and so these athletes agreed to run it with him.

He was so excited! (The guy in lane 2 kept telling him to place his foot behind the line, he would firmly plant it behind the line and then within a few seconds it would inch up again, he was just so anxious!)

(Smash is in lane 5.)

This was a fun race to watch.  So very sweet.

Here he is leading the pack!

Smash and his buddies lightly jogged about 10 yards or so behind him.

This young man was thrilled at the end of the race when he won! High fives all around for everyone.

It was one of the sweetest parts of my day and one of the sweetest things I have witnessed at a track meet.

Best race of the day!