Information on my Chronic Disorder

I guess it’s about time to stop being so cryptic about “my disorder” and “certain challenges that I face.”  Here it is:  I have a disorder called, “Eosinophilic Esophagitis.”  (What in the world is that?!) Okay, I’ll tell you–and I’ll tell you with my story.  (This is taken from another note I posted on FB from a while back).

For as long as I can remember, allergic issues (psoriasis, asthma, and eczema) have been a part of my life.  As I grew older, I started having classic hay fever and seasonal allergies as well.  When I was a teenager, I started having horrible pains in my chest and a constant feeling of burning in my stomach and chest.  I went to the doctor who promptly told me it must be excess stomach acid, and basically to deal with it; I was told to drink milk whenever I had that burning sensation so the milk could help neutralize the acid.  I dealt with the issues like this until after I was married.  I noticed, however, that milk really was not helping, and in fact, that I always felt worse after I drank a glass.  I went to the doctor again, who diagnosed with me GERD (gastroesophageal reflux disease).  He prescribed a pill akin to Nexium and told me I would soon feel better.

I didn’t feel better.  In fact, after the birth of my 2nd child, things went further downhill.  Instead of just feeling the burning sensation, I started randomly vomiting, the pain in my chest and throat became unbearable as if I had strep throat all the way down my esophagus 24/7, and food started getting stuck in my throat if I didn’t chew it really really well.  I also started having trouble breathing almost every evening, especially after eating things like pasta with sauce and cheese, and I had a really hard time sleeping because i felt I couldn’t breath or because the pain was so bad.  I went back to the doctor who scheduled an endoscopy to see if the acid had caused damage to my esophagus that might need extra or different medication.

English: Endoscopic picture of multi-ring esop...

July 31st, 2007 was the day I got the official diagnosis.  The doctor told me that I had 30-40 rings down my esophagus which was indicative of Eosinohilic Esophagus, or EoE.  I had never heard of the disorder and truly had no idea what that meant for me and my family.  Whenever I had received a medical diagnosis before, I was promptly given instructions and usually some type of medication so I could feel better quickly. I soon realized, though, that with this being such a rare and unrecognized disorder, none of my doctors knew what to do with me.  I tried getting the rings “dilated,” I tried swallowing steroids, and I tried to just deal with it.  Finally, on a visit to my allergist’s office, I saw a poster up about an eosinophilic disorder support group and went the first time I was able to.  The mother of a daughter with one of these disorders was the head of the group and helped me locate doctors who knew a lot more about these disorders than any I had encountered and I got on my journey of really trying to figure this stuff out.

Now I feel I finally understand the basics of the disorder.  Eosinophils

English: Intermed. mag. Image: Eosinophilic es...

English: Intermed. mag. Image: Eosinophilic esophagitis – high mag.jpg (Photo credit: Wikipedia)

are white blood cells that normally come out to fight against parasites, but in a person with one of these EGID’s they come out to fight against food or other swallowed allergens and end up causing damage and pain wherever they come in large numbers through the digestive tract.

Treatments I have tried: Drinking a completely hypoallergenic formula mixed with a gatorade as my sole source of nutrition to try and get the inflammation down, adding foods back in and then getting an endoscopy to see when the eosinophils come back, swallowing steroids, various medications, and many combinations of these treatments.

English: milk is cool from olly claxton

Since that day, I have found out that both allergens in the air and food allergens contribute to my disorder, although I am still unsure as to exactly what is causing my issues.  I am currently “trialing” foods–adding one food back in at a time to see where I have reactions.  I know for sure that my eosinophils go up when I have milk products and peanuts and tree nuts, but I also know there are other things I haven’t figured out yet.  Since I trialed milk about a year and a half ago, I have also added stomach inflammation to the mix (instead of just my esophagus) and we are still trying to figure out why that is happening.

These disorders are hard to live with.  The hardest part for me is when I am following my treatment plan so well– not eating anything I shouldn’t, taking all my medications, etc.– and I then I still have a bad day with pain, nausea, food getting stuck. . . Emotionally, it is really hard to live with.  Then, on those days I think, “well, then why I am even sacrificing all of this stuff if I’m going to be in pain anyway”, then I go eat something like pizza (which is probably one of the worst things for me) and the next day, I can’t do anything at all because the pain is so much worse.  The road to feeling better with these disorders is full of ups and downs and twists and turns and sometimes can get very discouraging.

Here’s the kicker: After reading this, you may think that I have it hard.  However, I have actually a pretty mild form of an EGID.  These disorders are actually more common in children, and there are many, many children who cannot eat ANY NORMAL FOODS.  There are many who have to get all their nutrition from this amino-acid based formulas through feeding tubes.  There are many who get a birthday cake made of cardboard or ice because they can’t eat even an “allergen-free” cake.  I have met several of these kids and they are amazing and huge examples to me.

I am not writing this for sympathy or to sound pathetic–I am writing just so you can get to know me a little bit better and maybe, if you know someone with these symptoms, you might offer that they get checked.  Everyone has their trials, and this is just one of mine.  In a strange way, though, I am grateful for it.  I have seen many miracles and blessings because of this and have gained many new friends.

I am so grateful to everyone who continues to be such a support to me as I try to figure this stuff out.  And to all who have read this, if you hear or know of someone who has similar symptoms, please encourage them to get an endoscopy with biopsies to find out what is going on.  These disorders can take so long to diagnose, and if they’re not diagnosed, they can’t get treated.

Thanks for listening!

New Piano Solo: Jesus, the Very Thought of Thee

Mormon LDS Beliefs

I have added a new arrangement–I realized that I hadn’t put any piano pieces up, and since piano is really my passion, I’d better get one up!  I love this hymn–such a peaceful and lovely melody.

I arranged this solo to start very simply and softly, and slowly build.

I hope you enjoy it!  As with all songs, please comment if you use it or like it, and please share with anyone who might want to perform it.

Thank you!

“Jesus the Very Thought of Thee” Sheet Music

Listen to a recording of “Jesus, the Very Thought of Thee”

And, I’m posting twice today–please read my post right below here and please comment!  I’d like to hear your thoughts on something that happened earlier today.  Thanks!

Helicopter Parenting and Homework

French Gendarmerie rescue helicopter taking of...

In our recent Ward Conference, our Bishop and Stake President gave us some straight-forward counsel about parenting.  The Bishop talked about “helicopter parents,” those parents who, in trying to shield their children, protect them from consequences that would actually end up teaching them.  For example, a helicopter parent might try to convince a teacher to give their son or daughter make-up work at the end of the semester in order to bring their grade up.  In this example, the child would actually learn far more about responsibility if they had to suffer the consequences of getting a bad grade.  Our Stake President talked to us about how the emphasis of training our children is shifting from outside the home, to inside the home; he talked about how our homes are the new Missionary Training Centers as we continue to have such growth in our missionary force.  He emphasized the importance of teaching the “what” AND the “why” of what we do.

The Bishop told us what he expects of young men and young women who want to serve a mission.  Again, he encouraged us, as parents, to help our children learn and do certain things for themselves before they reach this age.  Here is a partial list of the things he expects of a young woman or young man before he will recommend them for missionary service:

Missionary Companions

–Have at least $5,000 dollars saved.  This isn’t money saved by the parents, grandparents, or friends–this money is supposed to be saved by the prospective missionary themselves.
–Know how to prepare several healthy, balanced meals.
–Know how to do their own laundry.
–Have their own exercise regimen in place so it is a habit and they are healthy and strong.
–Have a testimony of the Restoration of the Gospel.
–Have read the entire Book of Mormon.

He gave a few other things in the list as well, but seriously, isn’t this a great list??  If we, as parents, actually helped prepare our children before their missions in each of these areas, I know our missionaries would be even greater than they already are.  The key is, though, it is  our job as parents to let them actually learn and grow in these areas, NOT to do it for them.

If we bear our testimony every night to our children, that is wonderful and important, but is that going to actually give them a testimony?  No.  They have to get that for themselves.  If we read the Book of Mormon to them as a family, that is wonderful and important, but is it teaching them to create the habit of reading themselves?  No.  They need to make that choice on their own. If we save money for our children’s missions, that is wonderful and helpful, but is that going to help them feel truly invested in what they are doing?  No.  They need to work hard for it themselves.  If we shield them from the consequences of each of their mistakes, we may feel we are serving them, but are we really?  No.  We are actually taking away great lessons of life from them and making them weaker.

Now, as a parent of young children, I have been thinking about this list a lot lately, and about how to not be a “helicopter parent.”  It sounds really great in theory, but this morning, I was tested.

Story time: My 7-year-old, Buddy, gets picked up by another mom on Friday

English: Voltaic Systems Backpack

mornings at 8:45 a.m.  After doing his morning chores and getting showered and dressed, I reminded him to have his coat and backpack with his homework in it (it’s due every Friday) ready in the front room so he could grab them as soon as this mom drove up–He said he was all ready, and I believed him, so he started to play and dance around with the other kids.

Well, 8:45 rolled around, and she pulled up.  I called for Buddy, told him they were here and that he needed to go.  Frantically, he ran to his room searching for his backpack (Apparently, he wasn’t as ready as he said he was).  Not there.  Then, he ran into the mudroom to check.  Not there.  I told him the carpool was waiting and he needed to go now.  He started to cry: He didn’t have his homework to turn in.  In that moment, all I wanted to do was promise him that I’d search for his backpack, come to the school later, and turn in the homework.  But this recent counsel from our Bishop flashed through my mind, and I didn’t promise him anything.  Instead, I told him how sorry I was that he was going to have to miss points on his homework for turning it in late.

I actually called my husband right after Buddy left because I felt awful.  I needed some validation that I was doing the right thing.  After all, he’s not 8 yet and not accountable. . .Was I being too harsh?

But the reality is, 2nd grade is a much better time to learn this lesson of being prepared and ready to go than it is far in the future when a scholarship or job is on the line.  I’m hoping that over time, these little life lessons will sink in.

But I still feel a little guilty. . .

What experiences in parenting have you had like this?  What else do you think we can be doing to help prepare our future missionaries?

To All LDS Women

IMG_7757  Woman and Her Talents. 1978. Sculpto...

I wrote this as a note on Facebook a while ago, but now that I have my own “Mormon Mommy blog,” I thought I’d post it here just so you can get to know me a little better and what my take on this side of things is:

To all Mormon women out there:

A lot has been circulating lately about “mormon mommy blogs” since we had some big discovery that other people who are not of our faith are actually reading what we write.  I have been keeping track of a lot of the comments about this and apparently it has caused several of us “Mormon Mommys” to start feeling bad about who we are, or at least ADMITTING that we feel bad about who we are because we don’t fit in with these stereotype mormon mommys somehow and now feel we are less of a mormon for it, or something like that. . .Many have commented that they don’t have anyone to talk to in Relief Society because they feel they are judged because they are so seemingly different from everyone around them.  That makes me SO SAD.  We are a church supposedly of people who include everyone, not excluding anyone.
Just wanted to say that I guess I don’t know the entire stereotype that follows us, but I have gathered a few tidbits here and there about parts and I would like to open this up and say, look at me–I may fit the stereotype in some ways, and in other ways I don’t, but IT DOESN’T MATTER.

So yes, I have a rather large family by today’s standards (my choice, and I’m happy with that choice), and yes I stay home with my kids (my choice, and I’m happy with that too), and yes I play the piano (something I have done since I was tiny and it truly is my passion), and yes, I enjoy couponing.  But if you don’t have a family, if you work, if you don’t enjoy music, or if you can’t stand the idea of clipping coupons, THAT’S AWESOME.

Now, here’s how I don’t fit in (just a partial list, of course):
— I don’t enjoy scrapbooking.  Actually, it’s a huge chore for me to just get photos into a book so the kids can have some photo memories someday.  I don’t “cute” it up with anything, nor do I have any desire to do so. But if you do, if you really ENJOY it, THAT’S AWESOME!

–I also make my kid’s birthday cakes, but I do it only to save money.  I don’t have any desire to learn cake decorating and my “decorating” usually is some frosting basically buttered on like you would on bread.  Besides birthdays, I rarely make baked goods, because I really don’t love it all that much.  But if you make yours ultra cute and fun and you ENJOY it, THAT’S AWESOME.

–I have also learned that in the new ward I am in, many of these moms are marathoners and they ENJOY it.  I have no desire to run a marathon and am not going to train for one simply to fit in.  I am happy to hear that other people actually LIKE it, and I really learn a lot from those that do, but it’s not for me.  I will exercise to be in shape and healthy, but that’s it.  Again, if you are one who likes that, THAT’S AWESOME. **are you getting my point yet?**

–I fully admit that my house is only completely clean when I’m having people come over.  I need a semi-clean house to feel sane, but it’s NEVER perfect.  I don’t enjoy cleaning, I do it only so I don’t get overwhelmed.  But if you ENJOY cleaning, and you really ENJOY having a perfectly clean house, THAT’S AWESOME.

–I can’t stand shopping.  I simply cannot stand it.  If I need something new, I find a sale, go into the store, and grab what I need and exit as fast as I can.  I have no idea what clothes are in style, nor do I care to.  I don’t have pierced ears, I own only 1 necklace, and only 3 pairs of shoes (one for exercise, one for regular days, and one for Sundays).  But, again, if shopping is YOUR THING and you love to find cute, in-style clothes, and you ENJOY that, THAT’S AWESOME.

So here’s what I’m trying to say if it’s not perfectly clear.  We are all different people.  We all have strengths and weaknesses.  What brings us together is our faith in Jesus Christ and his gospel.  It simply DOES NOT MATTER if you are married, single, divorced, have children, or none, work, or stay home, or a combo of both, or bake, or hate baking, or scrapbook,or hate scrapbooking, or love music, or hate music, or wear ‘in-style’ clothes, or wear your style clothes, or you like shopping, or your can’t stand shopping, or you drive a van, or an SUV, or live in a house, or live in an apartment, or grew up Mormon, or are a recent convert, or have kids who have all stayed in the gospel, or have kids who have left the church, or WHATEVER.

We all feel uncomfortable somehow of how we don’t “fit” the stereotype–LET’S STOP.  I believe we all pretend to like certain things simply to feel like we fit in more–LET’S STOP.  If we are doing something that’s really not our thing just to make people think we’re good “mormon mommys”, LET’S STOP.  Let’s just celebrate our faith together and learn from each other and become better TOGETHER.

Every one of you is AWESOME.  Truly.  I am so amazed at the wonderful women who surround me.  I learn so much from you, and I’m not just saying that.  Thank you for being so awesome.  Please, just realize that you really are.  If you’re feeling like you don’t fit in, know that I feel the exact same way, and you can come sit by me in Relief Society 🙂  We’ll ‘not fit in’ together 🙂

New Song Post: His Plan for You

Mormon Family Home Evening
I just finished writing a new duet for children and adults called, “His Plan for You.”  I wrote this because this month in Primary we are learning about how we are children of Heavenly Father and how He has an amazing plan for us.  This song highlights some of the big questions and answers about why we are on this earth and who we really are.

“His Plan for You” Sheet Music

Listen to a WAV of “His Plan for You”