Heavy Heart.....

It is with tears in my eyes and a heavy heart that I write this post. I have suffered extensive testing 13 hours from my home for 2 weeks. I have put financial burden's on my husband's shoulders for 2 years. I have cause severe anxiety in my youngest son's life from having to watch his mom pass out all the time, have heart rhythm problems, and having to call 911 several times because of it all.  I cannot be alone because of all of this.  I have had a fractured rib, concussion, hurt shoulder from passing out all in 3 months time.  I am one hot mess!!!!

I received a call this morning from the Mayo Clinic where I went a week ago and all my GI test came back normal.  No cancer or Crohn's or Ulcerative Colitis.  I just have IBS.......There is NO JUST IBS.  It is a very disabling syndrome.  It is aggravating my heart issues, and my POTS.  

All of this, the doctor at the Mayo Clinic agrees, is from Ehler's Danlos Syndrome.  I have seen a genetic doctor in Texas to confirm this. I have posted about this before but now I guess it is real.  Not that I thought is wasn't real then it's just that there was a "maybe not" still there. 

How am I going to do this? How can I keep living like this? I am so tired and exhausted from the pain, passing out, living everyday like a have a stomach virus. (cause that's what it feels like) I can honestly say, I am just tired.

My God is with me. My God is loving and faithful. My God knows my heart and my sorrows. My God has a plan for me. My God is merciful and mighty. I WILL continue to Praise Him in this horrible season of my life. He is my comforter, my refuge, and my strength. HE is all I need!!!!! How great is our God? He is EVERYTHING. He will never leave our side. I have to trust in him. 

HE IS MY HEALER

 

Day 1 of Mayo Clinic

It is so beautiful at the Mayo Clinic.  They have made it a place of peace and serenity and that makes such a difference to people who come here for help.  Everyone is so nice and they all help you and make you feel like you are the only patient that is important.  It's amazing. Here is a picture of blown glass hanging from the ceiling in the lobby of the Gonda Building:

If you look really close you will see that the walls are marble.  The floors are also.  

My first appointment went well.  They are fixing to put me through A LOT of tests everyday (expect the weekend) until Thursday the 16th. On Friday the 17th I will see my main doctor one more time and he will let me know what they found and what the plan is.  We will head home after that appointment. I am very scared about all the tests.  I mean they are gonna work me up from head to toe.  

I will stick a few more photo's up so you can see some of the pretty buildings here.  Thank you all for the prayers.

 

 

 

Day 1 of Mayo Clinic Trip

Day 1 of our Mayo Clinic trip is behind us.  We drove to Hannibal, MO and got a hotel for the night.  Poor Cory has driven 7 1/2 hours today.  He is such a great man.  He does so much for me and hardly ever complains. I couldn't ask for a better man. 

I am missing my "buddy", Cayden so much.  We have our morning routine down and he will not understand why GiGi isn't there to share early morning time with.  Here's a photo of him that Cristina sent me this afternoon so I could see him.  

He's so precious.  He is my inspiration to push through all the pain and sickness.  If he (a small little baby) can fight so hard everyday of his short life than I can fight through this.  

Day 2 of travel starts at 9 am and we have 6 1/2 hours left to drive.  I will be updating on Facebook often and here on my blog.  I am taking lots of pictures so I can remember this experience and see all of God's beautiful creations on the way. Here are a few I took today. 

 The Memphis Pyramid (Memphis, TN)

Getting off the Kansas City exit

 

Cory being silly at the McDonald's in Sikestan, MO
 

God's beautiful creations

You, my Lord, are my everlasting God, the creator of the ends of the earth.  You will not grow tired or weary, and your understanding no one can fathom.  You give strength to the weary and increase the power of the week.  Even youths grow tired & weary, & young men stumble & fall; but when I hope in You, O, Lord, my strength will be renewed.  

(A prayer I made using Isa. 40:28-31)

 

On my knees

The church my family went to when I was young was on my mind today.  I was reading my morning Bible study and for some reason the memory of being in that church and everyone on their knees praying popped into my mind.  Every time the pastor, or anyone, prayed the whole congregation would bow to their knees.  That is the way I was taught to pray.  Our church would also wash each others feet when we would have our monthly communion. I know that might sound a bit strange but the church did the things Jesus and his disciples did on the night of the last supper.  

As I have gotten older I have stopped praying on my knees.  We pray sitting, standing and with our heads bowed.  Is that how you pray?  At night I just pray silently in my head while laying on my pillow and trying not to fall asleep. I am ashamed to say that I have gotten very lax in my prayer life, before my illness.  Now, I am compelled to pray on my knees and sometimes flat on my face.  I feel the need to bow low and be humble when I talk with my Lord Jesus Christ. I also pray "out loud" instead of silently to myself. What I have found is this, when we humble ourselves this way our hearts and minds are open wide and The Holy Spirit will fill all of your "soul holes".  This is the way I pray now.  Try is sometime, you will feel so much closer to God.  I like this saying: "The only way up is down"

 

July 4th

We had such a great time in Northern Arkansas at my husbands Grandmother's.  She lives by the Buffalo River and she has a bunch of land so the boys & Cory rode 4 wheelers every day.  I stayed in the house with Cayden since the heat makes me pass out and messes with my heart.  Me and Cayden had fun though.  I love that little guy.  He is so perfect. (yes I could just be a little partial. :-) 

 He has such a sweet personality.  He smiles all the time and hardly ever cries.  You would think the little guy would just be so unhappy because of his horrible start to his life.  Being born at 28 weeks gestation, suffering 2 brain bleeds, brain damage, pulmonary bleed, and being on a vent for the first 2 months of his life.  He has scars all over his hands, wrists, arms, feet, and legs from all the IV's and PIC lines that were in him to save his life.  God has truly given us such a great blessing when he gave us Cayden.

My point to all of this is not to whine about Cayden.  My point is that we all have hard things we go through in our lives.  Season's that just knock us in a pit so deep and dark we don't know what to do.  God knows what we need and he always puts people in our lives that help lead us out of the pit.  Lord knows I have had lots of bough ts with self pity.  When we constantly think of how horrible our situation is we are missing out on all the miracles going on around us.  Cayden is my miracle.  If this tiny, sweet baby can push himself hard everyday doing therapy, struggling to drink a bottle because he aspirates so easy then I can push through all my pain and self pity.  

If there is no one in your life that inspires you to be better I encourage you to let yourself out there and find someone.  You can both encourage each other!!! Don't miss out on community and others who are going through rough times just like you are.  You won't be sorry you did.

A book I am reading

I am reading a book written by Beth Moore and this is what I learned today:

 

2 Corinthians 1:9-11

“In fact, we expected to die. But as a result, we learned not to rely on ourselves, but on God who can raise the dead. And he did deliver us from mortal danger.  And we are confident that he will continue to deliver us. He will rescue us because you are helping by praying for us.  As a result, many will give thanks to God because so many people’s prayer’s for our safety have been answered.”

Most of the power satan has over us is from pure deception and bluffing.  We have been chosen as believers in Christ, to know & believe & understand that He is God.  Until we turn from our idols to the one true God, we will never find liberty.  The giant step in the walk of faith is the one we take when we decide God no longer is a part of our lives BUT that He is our life.

Why does God allow us to spend so much of life in the heat of battle? Because He never meant for us to sip His Spirit like a proper cup of tea.  He meant for us to hold our sweating heads over the fountain and lap us His life with unquenchable thirst. God doesn’t ask us to believe In Him, but to believe Him.  Without Faith it’s impossible to please God.  Believing God is never more critical than when we have strongholds that need to be demolished.  The enemy taunts us with whispers like, “you’ll never be free.  You’ve tried a hundred times.  You go back every time.  You’re hopeless, You’re weak. You’re a failure.  You don’t have what it takes.”

If you are a believer in Christ all these statements are a lie.  You have Jesus ~ The Way, The Truth, and The Life. But you can’t just believe in Him to be free from your stronghold.  You must believe Him.  Also, believe you can do what He says you can do.  If you are thinking that you want to believe but don’t have enough faith then God’s Word, Mark 9:14-24, will give you encouragement.

2 truths from His Word:

1. God wields incomparably great power for those who choose to believe.  More than enough to break the yoke of any bondage.  Our belief unclogs the pipe & invites the power to flow.

2. God applies the same power to our need that He exerted when He raised Christ from the dead. Does your stronghold require more power than it takes to raise the dead?

If you are in Christ, you have been given the “same spirit of faith.” (2 Cor 4:13) The original word for “spirit” is literally translated “breath.”  When you speak God’s Word out loud with confidence in Him – rather than your own ability to believe – you are breathing faith.  Believing & speaking the truth of God’s Word is like receiving blessed CPR from the Holy Spirit.

Beautiful Thought

Faith is not believing in my own unshakable belief. Faith is believing an unshakable God when everything in me trembles & quakes.

Father, according to Your Word, it is possible to be broken off from part of Your plan because of unbelief.  Your Word says not to be arrogant but to be afraid. (Rom. 11:20) O, Father, I do not want to miss any part of Your plan because of my own unbelief!  Please forgive me for any unbelief, and help me walk by faith.  In your son’s precious name, Amen.

God's Umbrella Of Protection

I took this picture as the sun was setting from my front yard.  The colors of the sky are so beautiful.  God makes all things wonderful!!!  How much beauty we have around us and we don't even notice it unless something like a purple and pink sky catches our attention.

I haven't written in a couple of months because I have been so full of so many emotions that I don't know how to get them out in writing.  So much has happened since January and it has been a really LONG roller coaster ride.  When you have so many ups and downs you get dizzy and sick at your stomach and you don't know which way is up and which way is down.  The emotions going through my heart and my head have been joy, sorrow, anger, forgiveness, anxiety, non-belief......there are too many to name.  I will tell you this, and it is hard to admit, I have had anger at God be the dominate emotion.  What kind of Christian am I that I would be angry at the one person who has control over ALL things and who loves me UNCONDITIONALLY?  I will tell you what kind of Christian I am.......a human Christian who sins and falls short of the glory of God.


When things seem unbearable and I feel trapped my first reaction is to hunker down and take over.  I want to provide the outcome and I want to stage the ending act.  Even though I know in my heart all I am going to do is make it worse.  "Just give in, let go and let God" is what goes through my mind but the enemy whispers in my ear "God doesn't care what happens to you, he does not love you and he sure isn't going to take care of you and your loved ones."  I have to block him out because Satan has a really good view of my life right now.  All the things that are attacking me and my family are making us weak and the enemy has better access to our hearts with every thing that keeps coming down on us and threatening our health and happiness.  

There is a reason why we can't write the ending of our lives.  To be honest, I don't think I even want to begin tackling that job.  I think I am in a mess right now, I don't even want to imagine what it would be like if I wrote the ending of my story.  God wants us to call out to him for help.  He wants us to let go TOTALLY and run to him and stay under the shelter of his wings.  Matthew 23:37 Oh, Jerusalem, Jerusalem.....How often I wanted to gather your children together, the way a hen gathers her chicks under her wings, and you were unwilling.  Am I willing?  Are you willing?

I have been studying Psalm 91 and this chapter is all about God's umbrella of protection, how he wants US to run to him and stay under his protection, to let go of all the emotions and let Him write the outcome.  We might not like the outcome but we can only see so far ahead and we don't know how things would turn out if we always got what we wanted.  I truly believe God doesn't just dump bad stuff on us and then steps back and laughs while saying to himself, "Let's see how long he can handle that one without totally shutting down."  He doesn't give us more than we can handle.  Even when we are at our darkest moment he is there.  

I encourage you to read Psalm 91 and study each verse.  One day, one verse. Pray that God will open your mind and help you understand what each verse means.  God does not run here and there, trying to cover us.  He said, "I have made protection possible.  You run to Me!" And when we do run to Him in FAITH, the enemy will have to go through God to get to us.   


He will shelter you with his wings, His faithful promises are your armor and protection. 
Psalm 91:4 (NLT)
 

Great Blessings

So many great things have happened in my life since I posted last.  First great thing, my doctors have finally found the combination on medicine to help me.  I haven't past out in almost 2 months and my heart rate is under control.  I still have tummy issues but they are bearable now.  Woop, Woop!!!

Second, and this is the greatest of all, I am a grandma!!!!  Our precious baby Cayden made his appearance on December 17, 2011.  He was born way too early due to complication with the pregnancy.  He was 28 weeks gestation the day he was born.  Mother and baby are doing good but there has been a couple of big bumps along the way and still a long road to travel in his healing. He is precious though and so beautiful.

This is his little foot being held by his mommy.  He weighed in at 2lbs., 3oz. when born and was 14 1/4 inches long.  He has long arms and legs like his daddy. (my oldest son) He is such a great blessing.

His birth has brought our family so many lessons.  I have learned to have total Faith in God during my illness and I have often prayed that my husband and boys will learn to have the peace that I have when I am choosing to put my Faith in God.  Cayden has brought that peace to them.  They are wrestling with it, just like I did once, wrestling with having to put all worries and control on God's shoulders.  I admit that it is a hard lesson to learn. 

When you want something so bad that it aches in your heart all you want is for the pain to go away.  His mommy aches to hold her child, his daddy aches from fear that if he gets too close to him the pain of loosing him will be unbearable, his grandpa aches for his oldest son's fears, and his grandma aches for his parents that are having to watch their first child go through so much in his short time on earth.  Will he make it?  Only God knows the answer to that question.  "For I know the plans I have for you, " says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope.  In those days when you pray, I will listen.  If you look for me wholeheartedly, you will find me." Jeremiah 29:11-13

I cannot fully explain the peace that I have in my heart.  All I can say is that it is beautiful.  That peace carries me from day to day even though there is so much going on in my life right now.  Always look to the Lord for everything and remember, when things look dark, take a deep breath and thank God for all the great blessings he has given you.  Even in the dark you will see his face if you seek it, and it is a beautiful face......

So Many Bad Seasons

This bad season in my life has lasted so much longer than I wanted it to.  The sickness overtakes my body, mind, and spirit.  It is always present even in sleep.  I wake up often in the night in pain, with my heart racing, or just to run to the bathroom.  There is never a break from it.  I am reminded of my limitation every time I try to do the simplest things.  There is no end in sight.

I have another diagnosis to add to the long list of chronic illness's.  It's called lymphocytic colitis.  Wikipedia says it is a rare condition characterized by chronic non-bloody diarrhea.  The colonoscopy is normal but the mucosal biopsy reveals an accumulation of lymphocytes in the colonic epithelium and connective tissue.  The cause of this condition is not known and the outlook is unclear in persons with this condition. I call it a walking hell.  Sigh........if it is "rare" then it looks like I am going to have it.  My doctor thinks it is linked with the EDS (hence the connective tissue problems).  She also says that all we can do is treat the symptoms as they present themselves.  Hmmm, that must mean that I will always have to wear adult diapers when I leave my home due to the CONSTANT potty trot's that I have.  (that was probably way too much information for you all but I'm on a roll)  I can't express just how tired I am of being sick.

I pray so hard for God to heal me.  I know he can if he wants to.  This bad season in my life will end eventually, right?  I have hope that it will end but deep in my heart I don't think it will.  I just have to keep praying and reading my Bible and leaning on God's shoulders.  He will take care of me and he is the only one who can carry me through this very long season of sickness.

Hebrews 10:23
"Let us hold unswervingly to the hope we profess, for he who promised is faithful."

Why so many questions???

There are countless examples in the Bible where someone would ask God a question when they were in a dark season of their lives and he would answer them with a question of his own, why would he do this?  Was he just trying to add insult to injury when it was already so painfully obvious that these people were pouring their hurting heart out to him and was already confused?  It irritates me so much when I ask someone for help and instead of giving me the answer they make me think about it harder by asking a question.  So, why so many questions???


When we are in a dark season in our lives we tend to ask questions of God so we can understand why a "loving" God would allow us to suffer when he can change the outcome.  It is so tempting to ask him "Why" and to second guess your Faith in God when storms are brewing in your life.  Just like we do with our children when they are upset or during a meltdown we stay calm and ask them a question so they will calm down and think for a moment.  When we are upset and scared things tend to get jumbled up and we don't always make the most logical decision.  God does this with all of his children.  Would you really believe him if you asked him "Why" and he just gave you the answer?  No, I don't believe you would.  You see, our sinful human nature tempts us to think something like this, "Ya, I hear you God BUT I really think that I can fix it myself and I think my solution is much better than yours".  Sound kinda familiar?


When God asks questions we have to stop and think about it and then we have an "ah ha" moment and we just get it.  We also are forced to really turn it over to him and get all our fingers off of it.  No taking a little back because we think we have to always keep a little bit of control over every situation in our lives.  I believe in God.  I believe in Faith but boy is it hard to rely on the "unseen" and just go on Faith. 


My prayer every night is that I will have the courage to REALLY keep my hands off the things I turn over to God.  It is His will that will be done in my life no matter how much energy I waste trying to make things go the way I think they should.  In the end it will go His way anyway so why spend all my time worrying and fretting over it.  Wow, that sound so good! I can take it all off my shoulders and put it on His.  I don't know about you but I need all the help I can get.  I absolutely cannot make it on this earth without him.


"Take my yoke upon you.  Let me teach you, because I am humble and gentle at heart, and you will find rest for our souls.  For my yoke is easy to bear, and the burden I give you is light."  Matthew 11:29-30