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.

Some answers

My new GI doctor had some answers for me Monday.  I have an overgrowth of bacteria in my small intestines so I am on a very powerful antibiotic.  Hopefully that will help some.  That just sounds yucky, just call me the "bacteria" girl. :-) She is very happy that I am going to the cardiologist in Texas who specializes in all forms of Dysautonomia and she is going to coordinate with him on how to care for me.  She says that I have severe IBS and that I will have to live with all the symptoms for the rest of my life but that we can keep my symptoms from going crazy like they have been all year.  I am thankful that I don't have cancer or anything like that.  God is good and I am so thankful for his protection and for seeing me through this rough patch in my life.


I am looking forward to the day that I can drive again and be able to do the things I love to do.  That will be soon I hope.

Praying for patience........

Psalm 27:14

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.


I open the Bible to read and this is the verse I see in front of me.  It's funny how that happens.  You pray for an open mind and for God to speak to you and he always does.  He knows our mind and our soul.  It is so hard to be patient and to wait for him.  This is such a weakness of mine.  I need to pray for patience, and really mean it.


What does that mean, patience?  Think about it hard.  We need patience in raising our children and patience in dealing with our co-workers.  Patience in our personal life is so hard.  We know that we cannot control anything that happens but we don't want to accept it.  All things happen in God's time not ours.  When we are sick, hurting, and so down we don't see any way up that's when it takes courage to be patient and wait on the Lord.  He promises us healing and comfort if we have patients and we lean on him for all of our needs.  My prayer tonight is for all of this.  Patience to wait on him to allow healing in my body and the courage to turn it all over to him.

Two weeks of blah...........

****WARNING****** this post is not a "chin up" kind of post

Two weeks of blah.......................well that means that I have basically been so sick that I haven't been out the house.  I can't even walk from my bedroom to my living room without muttering under my breath "If I pass out at least it will be on the carpet this time and not the tile floor in the kitchen".  Getting up to go pee is a feat that I don't even want to tackle and I hold it until my bladder tells me "either get up and go or lay in the warm wetness cause that's what you are fixing to get".  Then I just pray (as I am sitting on the toilet) that I won't pass out because I know how traumatic it would be for one of my 2 teenage boys to find me face down on the tile with my rear end shining.  I have to wait until Cory comes home to take a shower cause they have nicely asked me not to do it while they are hear watching me.  :-)

Cory told me the other day that people at his work keep asking him how I am feeling and that he finally told them (he got tired of them asking all the time) "she won't get any better, what she has there is no cure for" and that was a melting down point for me.  I think I cried (and screamed some) for about 2 hours.  Your friends and family want to help and call often to check on you but you get tired of always having to tell them the bad news of "I feel worse today than I did yesterday" so you start lying.  Or I have started saying "do you want the truth or the sugar coated effect?"  I am sure that everyone gets tired of hearing the sad everyday answer of "No I don't feel any better today" and "Thanks for asking but I can't go anywhere with you because I pass out just from walking down the hall so I don't think I need to go to Wal-Mart".

I just want to feel half way normal for 1 day.  I hate shopping but I would LOVE to just be able to go shopping for 1 hour now.  I have a new respect for all the people that I know who have a chronic illness.  I used to just hug them and say "I hope you feel better soon" and pat myself on the back for a job well done but now I know just how that made the person feel.  You feel like someone kicked you in the gut while you were lying on the ground down for the count.

My husband and kids are wonderful at knowing just how to deal with all of this.  They never complain when I ask them to do things for me because I can't bend over anymore for fear of passing out.  Cory stands in the bathroom with me while I take a "cold" shower. (hot showers make me pass out) They leave me be for the most part and when I start doing something they know will ultimately cause me to fall out they just stand there beside me and watch me so they can catch me when I do go down.  They know that I feel this overwhelming need to be useful so they don't argue with me anymore they just catch me when my body says "enough".  They bring me cold rags and ask if they need to sit with me while I am lying down and they even know me so well that they know when to just let me cry and they just listen and don't say a word.  What is this doing to them?  I pray that they are strong and can handle this also.