Let Them Be Little

A MOTTO THAT THEY {LITERALLY} BACK UP!

Cute slogan:

(Click on photo to enlarge.)

"Say NO to DRUGS

Say YES to TACOS"

As a Mexican-food-lover, this is a slogan I can get behind.

In fact, Jon and I were behind it in traffic which was great because it allowed me time to snap a photo with my phone.

Not certain if this slogan is for "drug-free" week or if it is a permanent fixture on the truck (I sort of think it is permanent) but it was fun to see.

When the kids were little we would tell them to "say no to drugs, say yes to hugs" but once they started becoming teens, we didn't encourage them to "hug" everyone... :)

Now we have a new saying to use. Yay!

4 MORE UNITS

That is all I need to be back to normal range.

Only 4 more units.

Although it sounds like I am still lacking quite a bit of blood, it doesn't seem daunting to me after having been as low as I was; perhaps it is all a matter of perspective - or I could just be out of my head still... ha, ha.

If and when I get there (to normal), I don't know if my body will know what to do with that much blood. Really.

Just this week I am feeling like I am starting to get closer to my goal - at least MY normal -and yet I know I still have a bit of a climb ahead - so I am not really sure what to expect when my blood levels are "normal" like the regular folks. :)

And although I say that I don't know what to expect, I am hoping (and expecting) for great things!

Like energy. Any and all energy would be appreciated but I must admit I am hoping for energizer-bunny energy.

(It takes me such a long time to accomplish any thing these days!)

And the ability to exercise again.

(Or walk without feeling like I'm going to topple over...)

To be able to problem solve quickly. To think. Clearly.  :)

Feel creative.

Drive wherever and whenever I want...I just began driving a little again. Oh, how I love getting behind the wheel! Probably a little too much.

In general, I guess I am hoping to feel healthy. That would be soooo great!

 

 

 

 

COOKING UP AN 'A'

Megan's assignment in her 'Skills for Living' class was to decide on a meal to feed our family.

Certain criteria had to be met: all meal planning, shopping, preparation, cooking and clean-up had to be done by (only) her.

She took this assignment very, VERY seriously. (Even to the point of getting after Smash for sneaking pre-dinner bites!)

She planned and prepared for this assignment for days!

Her dessert was prepared the night before so she would have plenty of time to focus on the dinner prep the next day. Great planning!

Fresh fruit, beans, spinach rice, mexican chicken tacos (flour and corn tortillas both offered), brownies with ice cream and hot fudge, and it was delicious.

Meg seemed like a real pro in the kitchen, fortunately for her this was not her first time in the kitchen; it would have been a tough assignment for those kids who have never before had the opportunity to cook at home.

After she finished her assignment, I was asked to grade her on an extensive grade-sheet that her teacher had supplied. Her teacher wanted to know how Megan handled every last detail.

She did great!

Even though Meg was really tired after she finished the dinner and clean up and with that she got just a tad bit cranky for a few minutes (until I reminded her that I was grading her), I gave her 100% +.  She earned it; everything was done to perfection.

This was a fun assignment for the entire family.

 

She took a photo of her plate at dinner:

TWO LITTLE GIRLS

who are growing up too fast.

These two darling nieces are nearly three years old.

Even though I have counted and recounted from 2009 to 2012, it is still hard for me to believe it has been nearly three years since they joined the family.

Thank you Elizabeth, for sharing these photos with us.

There certainly is a lot ahead of them, isn't it nice they have each other?

Here is a photo I took of them a month or so after they were born:

"A sister is a little bit of childhood that can never be lost." ~Marion C. Garretty

HE FLEW HOME (to us)

carrying a little gift with him, a gerbera daisy. One of my favorites!

As he handed the slightly tattered and torn flower to me I had a flashback of him. In my mind I saw a very young Nathan, around 4 years old, with tiny hands and a bunch of 'special' flowers as a gift for me.

He, as well as my other kids, loved to bring me dandelions. Because of that, I like the little weed, especially after it becomes a seed-head to wish upon.

Yes, wishing upon those seed-heads will create an imperfect lawn but those little imperfections bring beauty into the home as they adorn the kitchen counter in a mason jar.

(You know there is always a little child around the corner with a big grin on his or her face when you see a bunch of dandelions shining in a sunlit window!)

Isn't that the nature of motherhood? Seeing beauty in and beyond the imperfections...

 

The gerbera daisy Nathan handed to me reminded me of those dandelion days, those long days of mothering that I absolutely loved.

Just after he gave the imperfect daisy to me, the one he brought with him on his flight, he reached into his backpack and handed me the missing petals. (Such a Nathan thing to do, so sweet.)

How I love good memories, those that have an ability to take me back to a place and time of such pure happiness.

They are gentle reminders of why I love motherhood.

 

IN CASE YOU WOULD LIKE TO KNOW MORE

about Celiac disease, here is a good explanation about the disease.

The information came from here. (Click on link if you want to read more than what I posted below.)

Another fun fact about me and celiac disease: my middle name is Celia, just add a 'c' to the end and you have celiac. (Goofy, I know, but this is how I embrace new challenges).  :)

Soon I will post something else, I promise. This will not become the "Let her have celiac" blog instead of "Let them be little." It is just that right now, I am totally immersed in reading, learning and understanding more about this disease in order to speed up the healing process, if possible.

Thank you to those of you who have reached out with helpful hints, suggestions and places for me to look for additional help. I really appreciate all of that!

Now, back to the article:

What is celiac disease?

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.

The small intestine is shaded above.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

Villi on the lining of the small intestine help absorb nutrients.

Celiac disease is both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

What are the symptoms of celiac disease?

Symptoms of celiac disease vary from person to person. Symptoms may occur in the digestive system or in other parts of the body. Digestive symptoms are more common in infants and young children and may include

• abdominal bloating and pain
• chronic diarrhea
• vomiting
• constipation
• pale, foul-smelling, or fatty stool
• weight loss

Irritability is another common symptom in children. Malabsorption of nutrients during the years when nutrition is critical to a child's normal growth and development can result in other problems such as failure to thrive in infants, delayed growth and short stature, delayed puberty, and dental enamel defects of the permanent teeth.

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

• unexplained iron-deficiency anemia
• fatigue
• bone or joint pain
• arthritis
• bone loss or osteoporosis
• depression or anxiety
• tingling numbness in the hands and feet
• seizures
• missed menstrual periods
• infertility or recurrent miscarriage
• canker sores inside the mouth
• an itchy skin rash called dermatitis herpetiformis

People with celiac disease may have no symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition—which can lead to anemia, osteoporosis, and miscarriage, among other problems—liver diseases, and cancers of the intestine.

*

If you want to know more, click on the link at the top of the post. Of the last list, I have had 7 of those symptoms listed. Not sure about bone loss because I have not gone in for my scan yet, I hope my bones are still strong.

Thinking good, strong (and happy) thoughts.

 

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.