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