Pure Joy! My Kewpie!

My little Kewpie Doll!

O.k. I'm going to brag a little bit about my 6 year old daughter- Ella!

She brings me such pure joy each and every day!

She even looked like a little Kewpie Doll when she was a baby!

Ella knows something is not quite right with me lately, but she really doesn't know all of the details of my sickness. We haven't really gone into too much detail with her because she is only 6 and its not like I'm dying here- thank the Lord! She has been giving me so many more hugs and kisses lately! Those hugs and kisses have really given me such joy and peace! Sometimes we just need a simple hug!

Ella loves God! How do I know? She talks to me about Him every day! She prays for the kids in her class at school who don't know God! She is NOT afraid to talk about God to anyone and everyone who will listen!

Yesterday, I took Ella to ballet class and the ride in the car is about 30 min.

She wanted to talk about cemeteries, R.I.P., tombstones and what all that means- not one of the most fun topics of conversation! She knows she is going to heaven when she dies because she accepted the Lord as her Savior last summer, but she couldn't quite grasp the concept of getting there when her body is in the ground in a cemetery! I explained to her that we all have a soul and it will forever be in heaven if we know God! Then she went on to say she wanted to be the President when she grows up because she wants to tell everyone about God! Then she said she needs to change her name to a Presidential name like Abraham Lincoln, or George Washington because I guess Ella Beckley was not good enough! :)

The kids stuff say....

They make you simply smile!

You Know You Have Cushing's Disease when..... (Part 2)

This pic was taken back in mid-Dec.- I looked at it and thought- I have Cushing's Disease again! My face was starting to fill out - starting to look like a moon face again! I felt o.k. at the time- except for maybe some extreme fatigue! I knew I had to get to the doctor and soon! Well, the rest - as you know is history- I have my surgery scheduled for March 26, 2010! Yay! The Lord is going to work out all the little details between now and then! We are praying!

O.K.- You Know You Have Cushing's Disease when.... (Part 2)

1. Your head hurts all day long- i've been going through advil and tylenol bottles like there's no tomorrow!

2. You get extreme joint pain all of a sudden

3. All your joints feel like rubber- I feel like gumby!

4. Your skin is really itchy and dry all over!

5. Your skin is really pale and see- through!

6. You just look sick and feel sick all the time!

7. You feel very shaky at times!

8. Leg muscles are very weak!

These are some of the symptoms I'm currently going through! I don't want to sound like I'm complaining- I just want people to become aware of the effects of too much cortisol has on one's body with Cushing's Disease! I want to document my experience so I might help other people struggling with this disease.

It could be alot worse- the Lord is taking care of me!

Psalm 121:1-3

I will lift up my eyes to the hills-

From whence comes my help?

My help comes from the Lord,

Who made heaven and earth.

He will not allow your foot to be moved:

He who keeps you will not slumber.

God does not sleep- He knows what you are going through- He holds my hand!

I learned this passage of Psalm 121 as a 3rd Grader for a Speech Meet.

Throughout my life it has always popped up in my mind- and given me such strength and peace.

You know you have Cushing's Disease when you have to put your spit in the mail

Another view of my Brain- way cool!

You know you have Cushing's Disease.......

When you have to send your saliva in the mail (for a test)- mailed my spit yesterday!

When you sleep more than your 16 month old!

When no one at any doctor's office or insurance company knows what you are talking about.... (I had to deal with my insurance company and doctor's office about one little test) it took like half the day! Medication of course not covered under plan- $800 out of pocket for just one vial of medication! God will figure it out. Anyway- that's enough of my rant!

Wow it feels good to vent!

My brain looks really good!

I look smart!

Isaiah 54:10

"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed, says the Lord, who has compassion on you."

Today was kind of a stressful day- but God reminds me through this verse that everything around you can be falling apart- but He is there with you, loving you! That is all we need!

Sometimes We Just Need to Wait......

Sunrise at our back door! Dan took a great picture!

Hair falling out in clumps now!
I'm not complaining- just sayin'
I'm glad that I have super thick hair because you really can't tell that I'm going bald! No, I'm probably exaggerating- I just need an excuse to cut it all off- really short like a pixie cut!

Sometimes We Just Need to Wait....
I need to wait for my surgery- March 26, 2010
But you know what- God is with me and He is teaching me to wait on Him and His will for my life.
Sometimes We Just Need to be Still.....
Psalm 46:10
"Be Still and Know that I am God."
"One of the Greatest Strains in life is the strain of waiting for God."- Oswald Chambers
True
Very True
It is sooo hard to wait, but it brings me such peace to know that I am not in control, be still and just wait!

Faith like a child and Kermit The Frog

O.K.- First the Kermit The Frog Part.
This is how I describe myself (the shape my body becomes when I have Cushing's Disease) Your arms and legs become really skinny- they loose all muscle tone and your mid-section becomes really round! I say this not to feel sorry for myself- or for you to feel sorry for me- but to bring awareness to some of the things that Cushing's patients have to deal with. You have to make fun of yourself and just laugh!


Psalm 86:11-13
"Teach me your way, O Lord,
and I will walk in your truth;
give me an undivided heart,
that I may fear your name.
I will praise you, O Lord my God, with all my heart;
I will glorify your name forever.
For great is your love toward me;
you have delivered me from the depths of the grave."

Faith like a child

God has been teaching me through this whole ordeal to have faith like a child.
I must give up my adult pride and control in my life.
It is not my life but His.
He has given me so much peace through this!
I must surrender myself to faith like a child!

Moonface!

This is my brain! Very Fascinating!

My pituitary is the bright white area located just behind the dark black sinus area- its between the nose and the eyes! My tumor is very, very, small about 4mm - you can see the tumor as a little round opaque area on the pituitary gland.

Anyway- Cleveland Clinic Day was yesterday! Finally!

I was able to meet with the specialist as well as the surgeon and schedule surgery for March 26, 2010- yay- I didn't even have an appointment with the surgeon (those kind of appointments usually take another month)!

The Lord is good!

He works out all the little, teeny, tiny, details!

Why is it so easy to worry and fret over them?!

"Rise, let us be going." Matthew 26:46

O.k. I'm not going to lie

Yesterday was a little nerve racking and I felt a little depressed- its so easy to do that when you are going through a health crisis.

I really don't like hospitals and seeing all of those sick people being wheeled around is not really sunshine and rainbows.

But the Lord was talking to me the whole time!

He said "You are my child and I will take care of you"

He said "You know what- It really could be worse"

He said " These sick people need the Me"

WoW!

My devotions for today talked about not wallowing in your despair- when you are going through trials- but take the initiative and rise- to Him!

What is Moonface?

It is a way to describe a patients face that has Cushing's Disease! Because it puffs out like a big Moon! Ahhhhhhhhhhhhhh!

You just have to laugh!

Short-term memory not so good!

O.k. so- yesterday was Valentine's Day!

Dan had asked me to make his current favorite dinner for Valentine's Day- (Super Easy Beef Stew Pie)

I went to the store on Saturday to get all the ingredients as well as some other essential items. Unfortunately, I forgot the most essential items - the beef stew and the pie crust!

Since I have Cushing's Disease my short- term memory is basically non-existent! I need to start writing things down - I don't like to write things down! Anyway, I made hot dogs and jazzed up baked beans for Valentine's Dinner! The jazzed up beans were excellent! Dan and Ella loved it! My wonderful husband loves anything I make- I love that man!

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."

2 Corinthians 4:8-9

God is in control of my life.

I wanted to share with you a quote from Elisabeth Elliot and her perspective of her life with God. Her husband, Jim Elliot, a missionary, was slain serving the Lord.

"All of us may be tempted sometime to conclude that because God doesn't fix it He doesn't love us. There are many things that God does not fix precisely because He loves us. Instead of extracting us from the problem, He calls us. In our sorrow or loneliness or pain He calls, "This is a necessary part of the journey. Even if it is the roughest part, it is only a part, and it will not last the whole long way. Remember where I am leading you. Remember what you will find at the end- a home and a haven and a heaven."

Who Holds The Key to Your Heart?

Happy Valentine's Day!

This is the yummy cupcake- I did not make- but enjoyed last night for desert!

I did make dinner though- It was super easy- garlic lemon chicken in the crock pot with creamy Yukon gold mashed potatoes and salad! I love to cook and try new recipes- esp. now that I have Cushing's Disease- it makes me super hungry! Anyway cooking has been kind of a therapy for me during this time! I suggest that you keep doing anything you love like knitting, reading, cooking, baking, sewing, yoga, pilates, or whatever you fancy, during trying times- it keeps your sanity!

Super Easy Garlic Lemon Chicken in a Crock Pot:

3-4 pound roasting chicken

1 med. onion roughly chopped

2 garlic cloves smashed

juice of 1 lemon

3 tablespoons of butter

1/2 tsp. dried thyme

1/2 tsp. paprika

salt and pepper

1. Rinse Chicken with cold water and discard giblets- pat dry

2. Put onion, garlic cloves, 1 tablespoon of butter salt and pepper inside of cavity

3. Rub outside of chicken with remaining 2 tablespoons of butter

4. Put chicken in crock pot

5. Squeeze juice of whole lemon over top of chicken

6. Sprinkle salt, pepper, dried thyme, and paprika over top of chicken

Cook on high for 5 or 6 hours

The chicken falls right off the bone- sooooo delish!

James 1:2

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.

I know that I do not consider it pure joy when I go through trying times!

But the Lord is teaching me, molding me, and making me into the vessel that He wants me to become- and that's exciting! I know He cares enough to test my faith!

"At times God, puts us through a discipline of darkness to teach us to heed Him" -Oswald Chambers

Buttercream Frosting

Margaret (my talented little sis) this picture you drew for Ella is so beautiful! It reminds me of Valentine's Day!

Buttercream Frosting

1 Cup Butter

3 1/2 cups confectioners' sugar

1 teaspoon milk

1 teaspoon vanilla extract

1/8 teaspoon salt

1. In a bowl combine butter, sugar and salt. Beat till blended.

2. Add the milk and vanilla and beat for an additional 3 to 5 min. or until smooth and creamy. ( I suggest you use an electric mixer or hand-held electric mixer) :)

Makes enough icing to cover 1 9in round cake or 18 cupcakes!

* Buttercream Frosting is my current new favorite thing on Earth!

* I've always wanted to try to make a homemade cake with icing from scratch- and last week I did just that! It turned out absolutely fantastic-esp. the Buttercream Frosting- I'm obsessed!

*So in honor of Valentine's Day- go make some cupcakes for your sweetheart!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:16-18

* This verse is the theme verse of my life currently!

Outwardly I might be having health problems- but the Lord is renewing me inwardly day by day! I feel his constant presence! He knows what He is doing in my life and I am excited! I know this trial is temporary and it is in plain view for all to see- but that's not important in my life- what is important is the unseen and eternal!

I'm just going to be honest!

This picture of my beautiful children brings me such joy!

"Thou wilt keep him in perfect peace whose imagination is stayed on thee." Isaiah 26:3

O.K.- I'm just going to be completely honest!

I really did not want to do this blog- It would be waaaaay easier to just crawl in a hole and pull the covers over my head and wait till this is all over!

But that is not what God wants me to do- He wants me to just throw it all out there!

As I mentioned earlier I've been struggling writing about this for about 2 weeks! Finally, God made me dream about blogging 2 nights in a row so I said- O.K.!

Also, I made a commitment about a year ago to (God changed my life) read the Bible and do devotions everyday from now on- no matter what!

Lately, my devotions have been about listening to God- Fancy that!

Case in point:

Today's Devotions

Titled in my Oswald Chambers book : "Must I Listen?"

He poses the question

"Why are we so afraid to listen to God?"

"Because we know that if God does speak, either the thing (that he's asking) must be done or we must tell God we will not obey Him".

Wow!

That's harsh!

Well, I decided to not crawl into that hole- even though it might pain me at times to talk about this illness.

So I'm just going to be completely honest-

I do this all so the Glory of God can be shone through my life!

It's His life not my own.

What exactly is Cushing's Disease?

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41:13


This is a picture of me taken at my 31st birthday- just a couple of weeks ago on January 27th.- I really did not want a picture taken of me but it truly shows the reality of the affect cushing's disease has on one's appearance!


What is Cushing's Disease?

Well, I'll tell you about the kind I have:

It is a hormonal disorder caused by a benign pituitary tumor
This type is 5X more likely to affect women than men
It typically affects adults ages 20-50 years old
This is a very rare disorder
This tumor makes you over produce cortisol throughout your body

What are the symptoms? (These are the ones I'm experiencing)

extreme fatigue
hair loss on head
more hair on body and face
weight gain upper part of body
skinny legs and arms
high blood sugar
muscle weakness
joint weakness/ pain
headaches
change in sleep patterns
mood changes
thin skin that easily bruises
short term memory loss

What is the solution?

Well, usually people with a pituitary adenoma causing cushing' s disease would have a surgery to take away the tumor- then they would gradually get better because the cause would be gone. The surgeries are done by very highly trained doctors- like at the Cleveland Clinic!

There is always a chance that further down the road it could come back or re- grow- but we will leave that to God!

Well, enough of the Cushing's talk-
I need to go cut up some carrots and celery for Ella's Heart Healthy Valentine's Party- " boring" as quoted by my husband Dan!
I'm going to let Ella sneek in some chocolates and lollipops!

Bring it!

"He who began a good work in you will be faithful to complete it" Philippians 1:6



Well- It's back- my Cushing's disease that is!

I first noticed weird things going on with my body about a couple months ago- but of course I ignored it- it was Thanksgiving and Christmastime and I had presents to wrap and food to make! The first uh-oh moment came when I broke out in bad acne, then my clothes started to not fit me right! I was starting to gain weight even though I was working out like 3 days a week and eating healthy! All my fat was moving up to my belly and upper parts of my body- I know it sounds gross- but I can deal with it! Anyway, I started putting 2 and 2 together, and I realized that I was experiencing the symptoms of the dreaded cushing's disease! The last straw was went I saw pictures of me taken at Thanksgiving and Christmas- my face was starting to look cushie!- ahhhhhhhh

Time to go to the doctor!

Sure enough my urine cortisol was soooo high!

Time to be referred - once agin- to the Cleveland Clinic!

My appointment is next Wednesday, February 17th- so right now it's just a waiting game!



Why do I use the word fascinating to describe my life with this disease?



Reason 1: Because God has been teaching me so much this past year (starting in 2009) before I started having symptoms about His process in my life as a child of His! He continues to challenge me with this new crisis. I'm excited to see what He will do next!



Reason 2: Because the word fascinating definitely describes my body and the changes it is going though the longer it is exposed to the over production of cortisol- I feel like a giant medical experiment- fascinating!



Reason 3: This is a fun reason- Ella- my 6 year old daughter- Her favorite word to describe things recently is Fascinating- its so funny to hear her say that word- she must be reading way too much Fancy Nancy!



Anyway- done talking about myself



Yesterday was a great day of firsts in the Beckley Family:



1: Ella lost her first tooth- its about time- that thing has been hanging on by a thread for months! My little baby is growing up!



2: I blogged for the first time- even though I really didn't want to do it! But if God brings it to you in a dream 2 nights in a row- you'd better do it!

Is it really fascinating?

Well, it is to me! I think that I have finally come to terms with it all- and I mean all!
Why am I doing this blog? I really don't know- but I think God wants me to! I know God is going to tell me what to say and what to share! Maybe I can help someone out there- a fellow cushie- or anyone else for that matter relate to life's ups and downs no matter what crisis you are currently going through!

O.K.- I'm going to try to make this short and sweet! (Because I really don't like talking about this disease and the effects on the body) although it is quite fascinating!

My History with Cushing's Disease:

I'm not sure when it all started probably sometime after the birth of my daughter back in 2003- I noticed some weird things happening to my body:
major fatigue
weight gain ( even though I worked out 5 days a week and ate healthy)
acne
all of my fat on my body moved up to my face and neck- i always had a puffy face, round and red
more body hair as well as more facial hair- ugh
major heartburn all the time
hair loss
I eventually lost all muscle tone in arms and legs and could barely go up and down stairs!
I had no clue what was going on- I just sort of ignored it for a while!
I was diagnosed with cushing's disease in 2006- so I probably suffered with it for maybe 2 years- who knows!
It took that long for doctors to figure out what was wrong with me- I know some people out there live with this disease for many, many years because Cushing's Disease is so misdiagnosed!
I feel blessed!
Anyway- the doctors said I have a pituitary tumor that is making my body produce way too much cortisol. I had to have surgery to have it taken off. So it was April of 2006 when I was set to have surgery at the Cleveland Clinic my doctor said we should do another urine cortisol test before we schedule. Turns out my test was normal- and I should be feeling better soon- my body will go back to normal- and it did- an MRI showed that the tumor just shrank by half its size for no apparent reason.
God healed me.
I, my husband, and my church had been praying for me all the time! We told God just take it away- and He did!
I went on to have a beautiful, healthy baby boy in the Fall of 2008- no complications!
The Lord is good!

Well- Guess what- my journey with Cushing's disease is not over- it's back!

And Fascinating

Bring it on!