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

My Refuge

I don't know about you but I need a refuge from time to time.  Somewhere to go where no one can bother me and I can just be quiet and listen to everything that is around me.  I like to sit on the back porch early in the morning with a cup of coffee and breath in the morning air and just quiet my mind.  We have very limited funds so I couldn't afford a "getaway" for just me but if I could I would love to go somewhere by myself and take some good books and my Bible and have a couple of day to just be quiet.


Our days are filled with so much activity, meetings, chores, helping the kids with homework, running errands....there are so many things we have to get done in 24 hours.  Never is their time to take refuge in something that quenches our soul.  At the end of the day we are so tired that we forget why we are even on this earth.  Time is something we can never get back once we have spent it.  Time is precious and we should never take it for granted but we always do.  One day we are holding our children in our arms for the first time and just like that we are watching them take part in their High School Graduation ceremony and getting ready to go off to college.


What would happen if we spent just 20 minutes everyday taking refuge in God and quieting our souls so we can really breath in all the wonderful things he has placed in our lives?  Maybe, just maybe, we would be able to look around at our lives and savor the precious moments that are so quick to happen.


Psalm 46:1-3 (NLT)
"God is our refuge and strength, always ready to help in times of trouble.  So we will not fear, even if earthquakes come and the mountains crumble into the sea.  Let the oceans roar and foam.  Let the mountains tremble as the waters surge"

Dancing In The Rain

As I waited all day for the rain to come (what do weathermen know?) I remembered a verse that I have always turned to when things seem too hard to bear, John 14:1, and as I breathed in the misty air out back on my porch I thanked God for giving me rain.  Rain gives life to all things.  How beautiful is that?  Life........how blessed we are to have the rain so plants can grow and trees can thrive.  During the Spring we usually get sick of all the rain.  Everywhere you go people comment on when the rain is going to stop.  We pray for those who live in areas where flooding happens easily and wonder, when is God going to stop the rain.  Then during summer when it is so hot and humid and we have very little rain we pray for storms to come so we can get a break from the heat.

I prayed a prayer of thanks this morning while waiting for the rain.  I am thankful for the seasons in my life when it seems like spring, storms everyday, constant gray skies & wondering when will God let it end.  If it wasn't for the rain in my life I would never get a season of new life.  The rain draws me closer to God because without him I have nothing to lean on.  No hope of any comfort or blue skies ahead.  You see, I need him more in times of trouble and I praise him even more during the dark storms of my life.


No one likes to have bad seasons in life but they will always come.  One thing is certain though, God promises us we will never be alone and that he will always be there to hold us up when our legs have been knocked out from under us.  Take comfort in that and praise God in all seasons of your life, especially the stormy ones.


John 14:1  "Don't let your hearts be troubled.  Trust in God, and trust also in me"

What Faith Can Do

I have been waiting to get an appointment with a genetic doctor in Texas that works closely with my cardiologist there.  Dr Suleman (my cardio doc) has been thinking that I have Ehlers Danlos Syndrome and that is what is causing my Pots and stomach issues. Trying to see a specialist usually takes jumping through hoops but not this time. The geneticist worked with me to be able to get in sooner rather than later. Well my friends I am happy to report that she was a VERY sweet lady and she was very empathetic. Now for the not so good news:

I defiantly have a connective tissue disorder but which one? The visit was very in depth. We went through all of my medical history, family medical history, and looked at pictures of my family. She has ruled out all but two connective tissue disorder, Ehlers Danlos Syndrome OR Marfans Syndrome. First thing out of her mouth was, "your children have to see a genetic doctor as soon as possible."  That is something NO mother wants to hear.  My heart just sank and I felt like it was actually breaking in half.  "Oh God, please help me handle this!!!" was all I could hear in my head.  The room starts spinning and everything coming out of her mouth was muffled.  I thought I was going to throw up.  Words were flying out of her like, organ rupture, aortic dissection, no physical contact activities for my boys, retinal detachment, sudden death, life full of constant pain in your joints, passing it down to your children.  Guilt, pain, sorrow, fear, suffocation....this is how I was feeling.  I GAVE THIS TO MY CHILDREN and they will give it to theirs. I will see my first grandchild in March.  Will my oldest son know the guilty feeling of giving his child a life full of pain and fear? 

Something happened at the very moment she stopped talking, I heard a faint whisper "Faith my child".  I know that sounds crazy but it really happened. Maybe I am mental now, and that's okay if I am, but I believe God put his arms around me and said, "Faith my child".  I felt immediate peace.  I knew that whatever happened next, I was being carried at that moment by my Heavenly Father. It's a good thing too because I am tired. I am more tired than I have ever been in my whole 38 years.  My soul aches for peace and my body aches for healing.  

Faith is the only option for me now.  The hope of it being "nothing" is gone. The battle will begin in my children's lives now and God will be there with us EVERY step of the way.  I might not like what I am going through but I know that God is with me and he hurts because I am hurting.  I am forever changed, inside and out.  

On the way home from Texas that night a song came on by Kutless called What Faith Can Do. The lyrics of this song spoke to my heart. I have the video of the song in this post so you can listen to it.  It is a song full of hope and promise that our God is wonderful and he can do all things.  Through faith we will be carried by the strong arms of our Lord and Savior!! Thank you God for giving us the choice to lean on you and be loved by you.

Psalm 59:16

"I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble."

Hospital Again

My wonderful husband took this horrible picture of me while I was waiting for yet another test to be done on me.  I was in the hospital for possible colitis so I had 2 days of antibiotics, fluids, and tests as well as pain control.  My husband loves me so much but he thought it would be funny to take pictures while I was waiting for Anesthesia doctor to come and put me to sleep. (even though I looked like death warmed over) 

When you have a chronic illness you take 2 steps forward and 3 steps back.  This gets so very frustrating and you can loose your mind if chose to concentrate on the future instead of living day by day.  I choose to live day by day because if I don't I will get lost in the depression and pain.

The reality is that you will not get much better.  Think about that for just one minute.  If there were a time when you were sick or had to have a surgery done and you were off work for a week or two while you recuperated think of that time.  You had hope that you were going to get well and get back to your normal life so you really didn't get too upset over having your life altered.  Well for me (and everyone with chronic illness) the hope of being able to return to the "normal" way of life is not there.  Kinda depressing isn't it?!  

Here is my fix for the above:

I have found a way to live in a "spiritual" everyday existence.  One where I spend most of my time with God.  I pray, read my Bible, study books to help me draw closer to God, and counting all the things I am thankful for.  Living this way has helped me so much.  I choose Faith over sorrow.  

Psalm 63:7

"Because you are my helper, I sing for joy in the shadow of your wings."

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW:

http://invisibleillnessweek.com/

1. The illness I live with is: POTS (Postural Orthostatic Tachycardia Syndrome); IBS; Ehlers Danlos Syndrome Type 3
2. I was diagnosed with it in the year:  2011 
3. But I had symptoms since:  2007
4. The biggest adjustment I’ve had to make is:  having my independence taken away
5. Most people assume:  that I will get better
6. The hardest part about mornings are:  getting out of bed without passing out
7. My favorite medical TV show is:  Grey's Anatomy
8. A gadget I couldn’t live without is:  computer
9. The hardest part about nights are:  not being able to sleep because of the pain & the irregular heart beat
10. Each day I take 9 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  will try anything
12. If I had to choose between an invisible illness or visible I would choose:  visible
13. Regarding working and career:  I miss it very much.
14. People would be surprised to know:  how much pain I am actually in
15. The hardest thing to accept about my new reality has been: having to depend on other people for things & to get me to doctors appointments
16. Something I never thought I could do with my illness that I did was:  drive again
17. The commercials about my illness:  have never seen any
18. Something I really miss doing since I was diagnosed is:  going canoeing and camping
19. It was really hard to have to give up:  my freedom
20. A new hobby I have taken up since my diagnosis is:  blogging
21. If I could have one day of feeling normal again I would:  go canoeing and camping
22. My illness has taught me:  faith
23. Want to know a secret? One thing people say that gets under my skin is:  "It will get better"
24. But I love it when people:  just hug me and tell me they are thinking about me
25. My favorite motto, scripture, quote that gets me through tough times is:  Psalm 40:2 "He lifted me out of the pit of despair, out of the mud and the mire.  He set my feet on solid ground and steadied me as I walked along."
26. When someone is diagnosed I’d like to tell them:  be as strong as you can and that it's okay to cry and be angry from time to time
27. Something that has surprised me about living with an illness is:  how strong I am
28. The nicest thing someone did for me when I wasn’t feeling well was:  come over and talk with me and be a true friend even though I looked and felt like a truck ran over me
29. I’m involved with Invisible Illness Week because:  raising awareness for Invisible Illness is crucial, so many people are hurting
30. The fact that you read this list makes me feel:  like you really care and want to learn about what is wrong with me

Does it really matter?

Way too often we hear this saying "Sh**t happens and then you die".  You might have even saw this on a bumper sticker on a car.  What do you think when you see or hear this saying?  Do you think "Yep, that's correct!" Then you think of all the things that have happened in your day to make it really suck.  I do it also.  Running around in our daily lives thinking about all the things we have on our "To Do" list and how little time we have to get it done.  Then we go home, go to bed, and it begins all over the next morning.  How sad and mundane is this way of living?

Just thinking about how I used to live day to day on a tight schedule wears me out.  I used to manage an office with 25 agents and 1 employee.  It was my responsibility to make sure everyone was taken care of and all things in the office were correct and maintained.  I LOVED my job.  You see, I have an A type personality and I love to keep things organized.  It didn't matter to me if I had to stay 1 or 2 hours past quitting time to make sure things were done.  I never gave much thought to what the family was doing at home while I was working late.  How they were waiting patiently for me to come home and cook dinner, make sure homework was done, clean the kitchen, and wash a couple of loads of laundry.  I was doing my job, making money for the family, working at my best for my company.  Guess what?  I was way off as to what is most important in my life.  I became ill with not 1 but 3 chronic illnesses and my body shut down on me.  I didn't listen to the little subtle hints of "Crystal, you have to slow down". "Crystal, God and family are more important". Maybe if I would have listened to those things I wouldn't be in the shape I am in now.  

Way too often we all live at such a fast pace that we can't hear the little voices warn us that things are going amiss.  I am not just talking about our health but about all things.  We have too little time on this earth to just buzz around like bees and not pay attention to all the beautiful things that God has created for us.  What I wouldn't give to go back in time and be able to smell my boy's hair when they were newborn, to count their 10 fingers and 10 toes or to watch them while they slept in my arms after I had fed them.  God blessed me with 2 healthy, beautiful babies and a wonderful husband and more often than not I have taken them for granted.  Don't we all?

God has given us so much joy in our lives.  Who cares about the 30 minutes of traffic that you have to sit in just to get to work?  Why do we get irritated at the driver that cuts us off on the freeway?  How much energy does it take from our emotions to silently bash a co-worker who didn't do things exactly like we wanted them to do?  Does it really matter?

Colossians 2:7 (NLT) 

"Let your roots grow down into him and draw up nourishment from him, so you will grow in faith, strong and vigorous in the truth you were taught.  Let your lives overflow with thanksgiving for all he has done."

Philippians 4:4-5 (NLT)

"Always be full of joy in the Lord.  I say it again - rejoice! Let everyone see that you are considerate in all you do.  Remember, the Lord is coming soon".

I praise God for all he has given us on this earth.  All things, even the trials.  Without hardships & trials in our lives we cannot grow in our faith.  How can we truly see God for all the wonderful things he is if we do not look to him during trying times?  Life is not always fair but I believe that everything that happens in our lives is for a purpose.  Embrace ALL things that God puts in your path.  He never gives us more than we can handle and he wants us to lean on him.

The next time you are feeling impatient in traffic, irritated at a co-worker, tired of telling your children to "pick up after themselves", stop and take a breath and remember, "God gave me all things and I am thankful for them".  Life is beautiful!!!  All too soon it will be over and we will be wishing for "just one more chance to get it right".  

Why.......

I was able to go to Dallas to the Heartbeat Clinic 1 week ago to see a cardiologist that specializes in Pots (Postural Orthostatic Tachycardia Syndrome).  He is a wonderful doctor and all of his staff was very kind.  It was so great to be in a doctors office where you know that you will be understood and not looked at like your crazy.  I was able to get answers as to why I have Pots and that was such a relief.  I have Ehlers Danlos Syndrome & I am going to go to a genetic specialist to get some tests ran to find out what type I have.  This is very important because it is genetic and my kids & siblings have a 50/50 chance of having it also.  I am prepared for my illness but not for my kids to have to go through what I am going through.  


Here are a coupke of links that you can go to if you want more information on these disorders. www.dinet.org www.ednf.org 
There needs to be more awareness raised for Pots & EDS.  They are both chronic illnesses & can be very dabilitating.       

Texas

I am in McKinney Texas tonight staying in a hotel so I can see a new Cardiologist that specializes in dysautonomia.  His name is Dr Suleman and he has a clinic that's called The Heartbeat Clinic.  (I thought that was a good name) I have been in constant contact with 2 women that live in Arkansas that have the same illness as me and he has been able to really help them so I am very hopeful. It will be so awesome to be able to sit with a doctor who knows what is wrong with me and that doesn't look at me like I am nuts.  I am very excited but nervous.  I will be going through lots of test tomorrow in Dallas and then Thursday at his clinic in McKinney and will get all the results on Friday.  


I am very thankful that I am getting the opportunity to come and see him.  It is just very sad that such sick people have to travel to a different state to get the help they need.  We need so much more awareness for this disorder and doctors really need to "catch up" on it so they can help there patients.  


I will post more as I get news but for now I miss my family but I am loving the quiet!!!!!  

Tummy Friendly Bread

Here is a delicious bread recipe that is more of a cake.  It is easy on the tummy and smells great cooking!!

Pumpkin Apple Spice Bread
Makes two 9X5 loves
Preheat oven to 350

Topping:
1 tbs all-purpose unbleached white flour
5 tbs brown sugar
1 tsp cinnamon
1 tbs canola oil
Combine all ingredients in a small bowl & set aside

Sift into a large bowl:
3 cups all purpose unbleached white flour
3/4 tsp salt
2 tsp baking soda
1 1/2 tsp cinnamon
1 tsp nutmeg
1 tsp cloves
1/4 tsp allspice
1/4 tsp ginger
Whisk dry ingredients with a wire whisk or fork until thoroughly blended.

In a large bowl beat well with an electric mixer:
16 oz. can pumpkin
3/4 cup canola oil
2 1/4 cups granulated sugar
8 organic egg whites

Fold into wet ingredients:
2 large Granny Smith apples, peeled & chopped (about 2 cups)

With a wooden spoon, add the dry ingredients to the wet, stirring the batter by hand until well blended.  Pour batter into 2 non-stick loaf pans sprayed with cooking oil.  Sprinkle on topping.  Bake for about 50 minutes or until a toothpick or cake tester inserted into the center of the loaf comes out clean.  Cool on racks.

I got this out of a book written by Heather Van Vorous.  The book is called "Eating for IBS".  It has lots of yummy recipes and they don't hurt your tummy!!  Her website is www.helpforibs.com so check it out if you have tummy issues.