We are at the Today Show raising awareness for all of my daughter's health conditions:
Ehlers Danlos (a connetive Tissue disorder), Dysautonomia (an autonomic nervous system disorder), Cold and Heat Urticaria (an allergy like disorder to temperatures), and Idiopathic Hypersomnia (a sleeping disorder).

To learn more about these disorders, please visit:
Http://www.ednf.org Ehlers Danlos Foundation
Http://www.alabamaedsers.org
Http://www.dysautonomiainternational.org
Http://www.dinet.org
Http://www.coldallergy.org
Http://www.hypersomniafoundation.org

Learn more about the spoon theory:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

When Life Seems Too Much and Every One Around You is Sick

Please allow me to encourage you the best way I can.  First, find time to take care of yourself when ever you can even if it is for just a moment here and there.  Second, all this is probably the worst that you will have to deal with at the same time.  Though it does not seem like it, it is all temporary.  It will get manageable for you, your spouse and sick child.

When my daughter first started showing signs of three rare conditions, I had just changed jobs to a great place.  During this time, my father-in-law passed away, within two weeks of that my husband struggled for a week to stay alive.  Within those next three years, we had over eleven close family members die including my mother in law.  My husband went through two additional near death experiences with severe health problems in between each one.  My daughter's health continued to decline through it all with doctors telling us we did not know what we were talking about and that we just need psych help.

We are now on the other side.  Neither my daughter nor my husband is cured.  But, we have found doctors that could help them both and have made life much easier on us all.  Times do get tough, but they do get better too.

The best things we have chosen to do include:
1) take our daughter out of public school and homeschool her.  My husband and I both work fulltime so don't think that should stop you.  We have really good software that does all the teaching and grading.  My daughter can take her time with her studies and takes many breaks, but she is not behind and there is no longer any pressure.
2) Also, when you can, take a break from all the medical doctors.  Find a point when everyone's health is stable, just take as much time off as possible until you are able regain your strength both physically and emotionally.
3) Change your expectations from what you always dreamed of life being like, to how you can best live your lives now.  Are the health issues a road block that you can work your way around, or are they a dead end pointing you in another direction?
4) Go get a massage, even if it is only a thirty minute hand massage.  You wouldn't believe how wonderful you can feel in those 30 minutes.
5) Help your child plug into groups online with others her age dealing with the same thing.  It always helps to talk it out and be able to help others.
6) Find alternative entertainment.  My daughter plays baseball, but it is with the Miracle League.  With this league you come and go as you need.  If you can only play ten minutes, great, everyone supports you.
7) Lastly, don't be afraid to cry.  It is okay.  Much of your stress will pour out with the tears allowing you to buck up and take on the world once again.

It all makes a difference.  It all helps to diffuse everyone's worries and stress.

The Scary Monster Has Appeared

Do you remember when you were a kid, laying in bed at night, wide awake, in the dark, allowing your imagination to get the best of you, the one of the monster under your bed?  You knew that once the light came on he would be wielded powerless and would just disappear.  But in the dark, he was all powerful, kept you frozen with fear.

Our monster has appeared from the dark.It is all powerful, even in the light.

As a baby, my daughter had chronic ear infections.  Each time the pediatrician would prescribe ear drop antibiotics to clear up the infection and it worked well.

Fast forward a few years, a few infections and a few more treatments and suddenly with each drop placed in the ears, you have a new condition.  You start having seizure like jerking.  This happened to my daughter.  We stopped the ear drops and refused to ever use them again because we knew that they caused the jerks each time they occurred.  As time went by the jerks began to diminish.  They were never completely gone, but at a level that they were not so scary, they were manageable.  For three years, the monster refused to come out into the light. Each time he tried, we were bigger and scarier than him.  Until now, three years later.


 The jerks have returned just as vicious as ever. 

In hopes of helping others understand this rare condition, I posted in several places across the internet about the condition.  It is rare disease month.  In doing so, it caught the attention of someone else.  Though her medication was never mentioned, the information she sent me startled me, it sent shivers down my spine.  We now know that we did this, we did it to our daughter and it is permanent.  The information that she posted was about Flourquinolones and the devastating effects that they have on the body.  As soon as I saw the word quinolone, it struck my memory that this word was used in the description of my daughter's medication, the ear drops.  This medication causes a deterioration of the connective tissue around the nerves.  Most people can handle a mile case of this deterioration, but someone that already has a connective tissue disorder, the condition has devastating affects.  Some people fall victim to the devastating affects after only one treatment, others it can happen after several treatments.  The effects may not appear right away, it can be months to even years later. 

What did my daughter use?  It was Ciprodex, simple little ear drops.  Who/what is the big scary monster? It is the drug, it is the drug company, it is greed, it is the unwillingness to admit the truth when damage is done to own up to it and take the drug off the market.  Do the research, flourquinolones don't just come as ear drops, they come in pill forms as well and may come in other forms.  It is an antibiotic. Even though it worked well with the ear infections, keep in mind that the effects are devastating and permanent.  Hopefully together we can squash this monster down to size and prevent this from happening to anyone else.

Ehlers Danlos Our New Best Friend

March marks almost two years since my daughter first started doing well with her Dysautonomia treatments.  She improved even more since this last October.  During the doctor's visit that month, her doctor told us that she would improve even more, but new symptoms/issues would arise.  They were always there, but they took backseat to all the other issues from the Dysautonomia.

He was right.  My daughter began having increased trouble with her joints.  We have gone to the doctors many times and even avoided going many times because of sprained joints.  She once again started showing an increase in having problems in her legs and feet.  The reason this just started showing up again?  She was now out of a wheelchair and using them normally again.  The stress was too much though.  After returning to the geneticist, we discovered that she had diagnosed my daughter two years earlier with Ehlers Danlos.

Our new focus is our new best friend.  My daughter has started doing physical theraphy specific for patients with Ehlers Danlos.  It has truly been an eye opening experience to see how weak and deconditioned her muscles are.  Thankfully, there is a physical therapist that knows Ehlers Danlos well and has treated others with it for years now.  He is very understanding and very easy to work with.

Our new best friend has really opened our eyes to other problems that she has been having all along.  It is like having a puzzle, the comparative picture is covered in dirt and you just can't figure out the pieces and create a picture as it should be.  Suddenly, somebody comes and cleans all that dirt off of the comparative picture and it all comes clear to you.  You had the right idea, it was just upside down.

We have to learn to see things differently, we have to learn to live life differently; afterall, best friends are forever.

Walking the Walk Part II

With much anxiety, we returned to our journey of seeing doctors attempting to get answers. To our amazement, the first leg of our journey went very smoothly. We found a local specialist for our daughter's Dysautonomia. He changed her meds which has given her a new lease on life. She is no longer chained to excessive sleepiness and excruciating pain when standing from the blood pooling. The jerks are very minimal. They are now being expressed as aggressive hiccups, but not as bad as before.

We took the second leg in our journey attempting to get a diagnosis for the joint issues.  To our amazement, the doctor had diagnosed our daughter two years ago with Ehlers Danlos.  Sadly we were never informed. I was so exhausted at the time from bad doctors visits that I never even asked for a copy of her records. Regardless, having this answer right off the bat was such a relief. We were able to get a script for physical therapy from a physical therapist who understands what you can and cannot do with someone with this condition.  We are currently trying to find someone locally, if not, we will just travel back north at least monthly for her to learn what she needs to do.

Do you know what a relief it is to have answers? It is amazing. We may not like the answers, but we now know how to work with our daughter to give her the support she needs. We now know that there are answers out there. I know that I will forever take my husband on appointments with us, he is now our rabbit's foot. Every time he is with us, we get answers.

Walking the Walk - Again!

We are starting our journey of visiting doctors once again, walking the walk.  When every we take this path along our journey, it feels like we are walking on a tight rope over a raging gorge.

TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.

We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos.  TLC is now having problems with nearly every joint subluxating with every movement.  Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected.  She is still finding new tricks that she can do.  She needs braces that will help prevent the movement of her joints from sliding around.

TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes.  It appears to be Retinal Migraines.  A lot of people I have talked to have had trouble with them in both their eyes.  TLC only has them in one eye right now.  Because it is in only one eye, it is commonly triggered by some bad sources.  We are praying that it is not and like so many others will eventually improve and go away.

Doctors are almost always difficult to work with; some get it, but most don't.  Some already have the answers with total disregard for what is actually going on.  Some are just plain crazy.  Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.

This is our journey and we are walking the walk, once again!

God is Love, our Deliverer, NOT our Tormentor

Oh what sadness to the hear the words of a dear friend who asked me, "What sin did you commit for God to punish your family and daughter with this condition?", "Ha, ha just joking."  Or for another friend to tell me that we were not living our lives right for God and that He turned us over to Satan to be tortured.  "You know if you had enough faith, God would heal her."

Oh wow, stick a dagger in my heart and twist why don't you?

"I tell you, you can pray for anything, and if you believe that you've received it, it will be yours." Mark 11:24

As a Christian, I poured over the scriptures looking for an answer.  I knew the truth, but like a ship tossed about in the ocean, I still wondered. I prayed every day for her to be healed, that this terrible thing would go away.  I had the faith that God would do it, greater than that of a mustard see.

"You don't have enough faith," Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible."  Matthew 17:20

In my prayers and time of devotion, the Holy Spirit reminded me that my daughter is Justified through Christ, not my sin or hers.  Our sins were nailed to the cross and we were forgiven once and for all time.  What great news!


"He canceled the record of the charges against us and took it away by nailing it to the cross." Colossians 2:14
 
"So now there is no condemnation for those who belong to Christ Jesus." Romans 8:1

Though we now have peace knowing that she has not been condemned with this condition, why does she still have it, why will God not take it away?  During additional prayer and study, the Holy Spirit has revealed more to us.

The first thought that really challenged me, was that not everything is of God.  How can that be?  Didn't God make everything?  Isn't He all powerful?  Didn't He give me the power to move mountains?  Oh, I so wish that I could find the Bible verse that started me on this notion, but I can't.  I didn't write it down, nor does it come up when I Google it.  Regardless of this fact, it is truth.  God created everything good.  He also gave us the opportunity to make our own decisions.  Not only us, but the angels too.  It was this power and their wrong decision that caused Satan and his legions to be expelled from the heavens.  Humans also have that same choice, quite often we make the wrong choices.  Back to the thought that not everything is of God.  I finally learned that God created good, Satan evil (the absence of good) and mankind consistently makes bad choices which we must learn to live with.

Mankind made decisions through out every generation; affecting the next.  We punish ourselves, our children and each generation following them when we make certain bad decisions.  Not every bad decision affects all generations, some will just affect the person going astray.  But think about it, we put things in our bodies that we cannot and should not trust.  The greed of the corporations leads to shortcuts in the development of medicinal drugs, methods that are not fully tested.  Some consequences of these drugs may not be realized for a whole generation.  The same issue with our food.  Look at Mad Cow disease.  A shortcut was developed, a means for saving money, led to cows being fed "cow parts."  Not just muscle, but all the otherwise unused waste.  Oh, but we stopped that years ago you say.  Well lets look at something that occurs today, meat and vegetables being exposed to radiation to make them last longer.  There are so many shortcuts that we take in making things less expensive and better able to mass produce - all at the expense of our health.  This is our gift to ourselves and the generations following.  We created this problem.  I truly believe that this is the problem with my daughter's illness.  But, it still begs the question, why God will not heal her.

 God allows our suffering for three wonderful reasons,

1) He knows what is best for us. He allows us to learn lessons from our own bad decisions. There are many things that we don't understand and won't until we reach heaven.  But remember, His son suffered far more than we can ever realize on our behalf.  We can suffer a little until we get to heaven.

"That's why those who are still under the control of their sinful nature can never please God."  Romans 8:8

"Come close to God, and God will come close to you." James 4:8a

2) He uses this suffering to draw us nearer to Him.  When we are weak and defenseless, we draw really close to God.  He never leaves us, but we leave Him when we feel strong and able to handle life on our own.  I can't tell you how much I miss the closeness when the symptoms are manageable. 

"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing." James 1:2-4

God allows storms in our lives.  But remember that He is right there with us getting through it.

"The righteous person faces many troubles, but the LORD comes to the rescue each time." Psalm 34:19

"I also pray that you will understand the incredible greatness of God's power for us who believe him. This is the same mighty power." Ephesians 1:19

3) If we allow ourselves, God can use afflicted believers to reach out to afflicted non-believers, those with no hope.  He can use us to reach out to each other to ensure that share His love which heals many pains.

I pray that you will know God and find comfort in Him even when bound by the consequences of mankind's poor choices.

Even If…

“Even if the healing doesn’t come.
And life falls apart.
And dreams are still undone …
You are God. You are good.
… Forever faithful One …
You are God and we will bless You …
Even if the healing doesn’t come.”

—Kutless