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 Monster Has Been Brought to its Knees

Have you ever had a sinus headache?  I get them often, quite severely.  I have found that pressing just above the nerves will block the pain signals to the brain for as long as I apply pressure.  With Myoclonus, Myoclonic Jerks, specifically, I wanted to see if I could attempt the say technique on my daughter to give her some relief from the jerking spasms which she endures.  Not only did it block while pressure was applied, but it was successful at short circuiting the signals and stopping the jerks altogether.

Oh what joy!  We have found a way to bring the monster to its knees. I have highlighted the pressure areas in the picture below.  For neck and shoulder jerks, I applied gentle but firm pressure to the bundle of nerves as they enter the shoulder.  If only one side of the body is affected, I have to apply pressure to that one side.  I apply pressure until the jerking stops.  This pressure point will not affect breathing or blood flow.  If her position is ineffective or affects breathing and/or blood flow, I move my hands around.  

The same process would occur for the hips and legs that jerk.  The bundle branch of nerves come from the spine, through the fatty part of the buttocks to the legs.  I place the palm of my hand into this bundle, wait for the jerks to stop or come to a very slow tempo, then release. I feel the nerve pulses fight against me, but they do stop.  The harder the signals are, the longer it will take for them to subside.  If the jerks occur on both sides simultaneously, I will have to apply pressure to both sides at the same time otherwise it is much harder to get them to stop.  Once the signals stop on one side I can release and maintain pressure on the other side until they all stop.  My daughter has immediate relief once they subside.

In either case of the upper or lower body being affected, if the jerks do not stop, I move my hands around until I notice a reduction in the intensity of the signals.

My daughter says that it hurts and is uncomfortable, but she would rather that little bit of pain than have the jerks for hours on end.

Blessings to you and hope you find some relief!

Credit to Zygote Body for the use of the picture below.

An Article About Our Family Fighting Dysautonomia

Here is the link to the Dinet newsletter:

http://www.dinet.org/images/newsletters/2014_Spring_Dinet_Newsletter.pdf

Check out their website if you have not been there or have not visited in awhile.  They have a great leadership and provide awesome information and support for all their members.

We are the Champions!

We are the champions - my friends
And we'll keep on fighting - till the end
We are the champions 
We are the champions
No time for losers
'Cause we are the champions - of the world
                              

Do you remember these lyrics, this song.  We fight everyday, but regardless of each battle along the way, no matter how disarming a new symptom or issue may be, We are the champions.  The battle is here and now, but the war is already won.  We will enjoy fellowship with our redeemer who promises no more tears, no more pain and an eternal presence with Him in the most beautiful place in existence.

We can hold on through every hardship because He already paid the price on the cross.  He loves us and wants an eternal fellowship with us.  All we have to do is believe in His son's death, burial and resurrection.  In believing we exercise faith through belief.  We express faith through actions of love.

Are you interested in such a relationship?  Let me know, I will introduce you.  A Christian life is not easy, we struggle just as much, and in some cases more so than non-believers.  There are people who are persecuted for this love.

We have a testimony of God blessing our daughter and our family through some terrible health and life experiences.  We just need to stay focused on Him.  Unlike the message in the song, we are champions not because of our own efforts, but because of those from our Lord and Savior!

Blessings!

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.

What a Big Jerk!

Back when I was in the 8th Grade, we were treated to a camp day.  It was nearing the end of the year and symbolized the transition between middle school and high school.  At the end of the day a presentation was put on by a group in our class.  It was about a lawn mower that would not get started and run.  Members were asked to come up from the audience and start the mower.  The first couldn't.  The second person tried harder, but still couldn't.  The third person tried really hard pulling on the cord and finally got it started.  The final comment of the presentation was, "Thank you, [so and so], we knew it would take a Really Big Jerk to get it started." The joke was on the student, not a recognition of his strength.

For my daughter, she is officially in the club of those that suffer from Myoclonic Jerks.  It is no joke.  Sadly, the body goes through what we perceive to be giant, full-body hiccups.  "The Jerks," as we so unaffectionately refer to them decided to pay her a visit three years ago during the time she had a bad ear infection that would not go away.  Every time we put drops in her ears the jerking would begin.  They were physically quite violent for her.  Sadly, they did not go away when we stopped the ear drops.  She would have periods of rest, but never a day went by that she didn't have an issue with them.

We took her to the ER when they started during one of her private music lessons.  She couldn't even walk out of the room, I had to drag her to the hall then get a wheelchair.  Once we got to the ER, they immediately took her in.  By this time she was having upwards of four to six jerks a second.  They were very hard, very fast and attacked her whole body. The ER docs were in a panic to find out what was wrong.  Then out of nowhere, they stopped.  The doctors went ahead and gave her some meds and home we went.  The ear infection lasted for about a month and the jerks for a couple of months longer.

She did see her neurologist, had a brain scan for three consecutive nights making it possible to determine that she was not having seizures along with the Myoclonus.  The doctor did put her on some Klonopin each night to help keep them under control.

After the jerks subsided, we only saw them in small spurts.  Anytime TLC had a pain or became cold, she would begin having the jerks, mild in strength and repetition.  Sometimes it would only be one jerk and other times she might go for a half hour.  The jerks mostly just affected her neck and her arm at this time.  For three years following, it rarely got bad.

A year ago, we had an attempted home invasion during the middle of the night.  The Jerks had started just prior to that; however, they became very intense for a couple months following. The doctor was not worried about it and we continued her as before.  Within three months they again went away.  She was off the Klonopin at the time and had been for quite sometime prior.  We ended up putting her back on it to keep her stable.

Well, this week it returned and we don't know why.  She is still on her Klonopin, is not sick and is not in pain or persistently cold.   But this time I noticed two different types of events with the jerks.  One that is what we refer to as aggressive, they are there then they are gone, usually just a small cluster of jerks.  The second was less aggressive, very mild, but constant without a break.  It only affected the left side of her body and it was like she was "chair" dancing to the music being played in the room.  It continued for an hour and then went away.  Even though they were not hard jerks, they were constant almost to a tempo and exhausting.

They come whenever they want, during her sleep at night, during the day, during stressful times and during really fun times.  They can be as simple as a finger or eyelid twitch, very hard and painful hiccups to full-body episodes that look like Grand Mal seizures.  She can't make them happen and she can't make them stop. She said they hurt even more to try and make them stop.  There is just no control over them.  And, in our opinion, they are "Really Big Jerks."

Just another stop along our journey, in rare company.

To see a short video of her having a mild jerking episode in her sleep, click here.
The video above shows a mild version of a full body episode.  The jerks are sudden and very painful.  She has been to the ER at one point with these being ten times as fast and much harder.

The video below shows her having a slightly different episode which occurs constantly, the jerking is milder and it can last anywhere between 30 minutes and two hours.  It also only occurs on her left side. The one in this video lasted for one hour. The jerks were focused in her hip; however, you can see a jerk that was focused in her neck a couple times as well.
http://youtu.be/rcHZ4uhr1Gs 

My Favorite Websites / Blogs

Websites:

Cold Urticaria

www.coldallergy.org

http://www.jaoa.org/content/101/5_suppl/1S.full.pdf 

Facebook:

Kidz 4 CU
Cold Urticaria Parents
Cold Induced Urticaria
Cold Urticaria- Yep you can actually be allergic to the cold.
I really am allergic to cold!

Blogs:

http://www.pilgrimagegal.com/search?updated-min=2013-01-01T00:00:00-05:00&updated-max=2014-01-01T00:00:00-05:00&max-results=36

Ciprodex - Fluoroquinolones

http://floxiehope.com/2013/07/28/ciprodex-poison-marketed-to-children/

Articles:

 Cold Urticaria

http://www.washingtonpost.com/lifestyle/on-parenting/how-to-parent-while-having-a-chronic-disease/2013/11/06/fae3176a-463d-11e3-b6f8-3782ff6cb769_story_1.html 
http://www.today.com/id/41466518/#.UnKUWVOojAc
http://abcnews.go.com/blogs/health/2012/11/15/kids-allergic-to-the-cold-literally/
http://www.dailymail.co.uk/health/article-2113825/Abbie-Tully-12-allergic-cold-deadly-allergic-reaction-slightest-chill.html
http://usatoday30.usatoday.com/news/health/medical/health/medical/coldflu/story/2012-01-23/Allergic-to-cold-Its-a-real-condition-experts-say/52759906/1

http://www.nbcnews.com/health/allergic-cold-gene-detectives-find-new-clues-1C6435965

Advocacy

 http://www.parentcenterhub.org/

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!

Go Ahead and Cry

In 2007, my father-in-law passed away following his third heart attack.  Two weeks later, my husband had his first heart attack.  Everything went well for my husband as he recovered, he practically danced out of the hospital the next day.  Not long following my husband's successful recovery, he had to return for a follow up procedure to add one more stint to a nearly blocked artery.   His return visit was nearly his last.

I sat in the waiting room with family and pastor waiting for the procedure to end expecting to waltz out of the hospital the next day.  There was no damage to the heart from the mild attack.  There should have been no complications from the current procedure. I had prepared myself that the procedure could go longer than expected. I had no fear when it did.  I could hear the doctor's name being paged multiple times over the intercom.  I thought his office was trying to get a hold of him. I never thought that is was my husband barely hanging on to life.

The doctor's primary nurse came out and told me that there were complications and they were having trouble resuscitating my husband.  An hour or so later, the doctor came down and confirmed that they were still having trouble.  The doctor could not even look me in the eye to tell me.  He suggested that we go up to ICU to see my husband, just in case.

Before we left, I cried.  People that I didn't even know came up to me to console me, to tell me that as a Christian, I could put my trust in Christ to take care of him, that I could put my hope in deliverance by grace.  They told me that I did not have to cry.  Those with hope don't cry.  To keep from making more of a spectacle of myself, and to alleviate the fears of those around me, I quickly wiped the tears away.

My husband was in the hospital for a week recovering and during that time I lived in the waiting room.  On one occasion, I walked down the hall, sat down and had an all out cry.  Every thought, every stored emotion poured out.  No one was around.  I did not have to think about anyone else.  I was able to unleash the frustrations and fears and deal with them one at a time through the tears.  Crying is okay.  Crying is therapeutic and brings you in touch with raw, honest emotions.  I was able to bring closure to these emotions and begin to build a bridge toward a healthy touch with reality.

As a mom with a child that has three rare conditions, Cold Urticaria, Dysautonomia and Ehlers Danlos, I consistently face frustrations dealing with changes in symptoms, changes in medications, doctors, schools, church leadership and friends that don't understand.  For every step I make forward, I fall two steps backward.  There are times I am scared, times I am mad, times I am crushed and I times I don't know what to give.  But, I have always left myself open for when it all becomes too much, to step away from the crowd and have a good cry.

When I am done, my mind is clear, my resolve is stronger and as a mother of a special needs child, I am ready to take on her world once again.  Believe it or not, it made my faith stronger, it brought me closer to my Christ.

P.s. My husband is alive and well. :)

Encouragement - YOUR Weaknesses, HIS Strength

From IntentionalLiving.com

YOUR Weaknesses, HIS Strength

Cerebral Palsy patient, 14-year-old Jack Carroll, was a contestant on Britain’s Got Talent, and pushed his walker onto the stage to entertain the crowd. When asked to tell a little bit more about himself, he replied, “I’m a professional gymnast!” The tension snapped like a twig and the crowd burst into roars of laughter.

Backstage, before his audition, Jack had recounted, “I use Cerebral Palsy in my act because a lot of times, in comedy, your weaknesses are your strengths.” What a powerful concept!

The simplicity of Jack’s idea can be instrumental in your walk with God. He is the only one who knows your heart, your mind and your inner workings. He can “raise in power” what you do in weakness to truly change your life (1 Corinthians 15:42).

He knows you, and He knows your heart. Be encouraged in His strength, despite your weakness.

Today’s One Thing

Are you willing to surrender a personal weakness to God so He can turn it into a strength?

Go Deeper

1 Corinthians 15:35-49; 2 Corinthians 12:1-10

Play After Every Storm

I added this to my facebook page "Praying for TLC" over a year ago. But it is worthy to be posted here.

Borrowed from Wikipedia - Matthew Joseph Thaddeus Stepanek, known as Mattie Stepanek, was an American poet, who had six books of poetry and one book of essays all reach The New York Times bestsellers list. He became a peace advocate and motivational speaker, and lobbied on Capitol Hill on behalf of peace, people with disabilities, and children with life-threatening conditions.
In 2002, Stepanek began a three-term appointment as the Muscular Dystrophy Association National Goodwill Ambassador.
Stepanek suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy that resulted in his death. Mattie Stepanek died three weeks before his 14th birthday.
A eulogy was delivered by former President Jimmy Carter, who said,
"We have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek. His life philosophy was 'Remember to play after every storm!'"

What a wonderful story to find as I sit here during a major storm that is sweeping our nation. Not only do families of children with special needs deal with natural storms, but also health crises. Each crisis can be a storm unto itself and each storm can manifest a multitude of crises. May we learn to play after every storm.  - March 2012

The Daunting Notion of Homeschooling

With homeschooling, the benefits are wonderful. Benefits start with the health issues of course. Since we started, TLC has had very few breakouts to deal with, fewer sprains and less stress.

Your child is able to take learning at their own pace. They can be quick at learning or can slow it down. In our state the only two requirements state that we must be in a homeschool cover and that the children must attend school 170 days a year. A day is defined as four hours. Most often times the work is done in two hours or less and the rest of the time can be spent on practice problems, "homework," or field trips. A school year is defined as August to July.

You can easily take days off when the kids are sick and start right back a day, two days or a week later.

You can go on vacation whenever you like.

As long as you include the basics, English, Math, Science and History, you can teach anything you want and how you want. Public Schools teach for the SAT/ACT tests. The teaching is usually rushed and is usually geared regardless of the slowest child in the class. With homeschooling, you can teach them the way we grew up learning, breaking it down and knowing the details.

If your child does not understand a topic and does not do well on a test, you can do the topic over again or do the test over again once the problem areas are worked out.

The cost does not have to be very high. You do not have to teach. As a matter of fact, with the exception of Algebra, I do not teach, the software does. Also, I do not have to be present, I work 8 hours a day. Mind you, my daughter is much older and loves to learn so I know she doesn't get distracted doing other things. The software also helps just in case I am not sure. I also break her four day down into two segments. She works two hours by herself in the morning and I work with her for two hours in the evening.

Lack of socialization is not a problem either. With the right homeschool cover, church activities or other activities that you participate in, kids are well socialized. You could arrange for kids to come to the house to play.

Homeschooling is no where near as scary as it seems. You and the child will need dedication and commitment to set apart time during the day and stick with it everyday possible. If you get backed up, be committed to get caught up during the summer or when time is available during the regular school year.

You can do it, it can be done in an affordable way and the kids will love it!!!

Live and Let Live

Having a child with a life threatening condition is scary.  A parent worries about every environment where the child exposed.  Preparation and planning are important for every trip.

In the early days of being diagnosed, we were very protective of our daughter.  In part because we did not know what we were dealing with.  Also, she was be putting on meds that did not always help.  We slowly learned that others were not as protective of her when she was outside of our care, no matter how much we prepared them.  Yet, there was fear, fear of not knowing what would come.  All the what if's.

We did not live in some far remote area where we could be in a cabin for half a year and have no where to go the other half.  We were in a sizable city and very active.  Our child was a social butterfly, she had experienced eight years of being out and about, being social prior to her development of Cold Induced Urticaria.

Because of her diagnoses and the limitations that come with them, she became a prisoner in her own home.  She could only be out when her father and I could be around.  She even had to be homeschooled.  Her only opportunity to be socialized was at church, during the Miracle League season and through her violin lessons.  She went from being very outgoing prior to the health issues, to being withdrawn.  Her hope for getting better was gone.  In just a couple years, her childhood was gone.

We were able to get her on medications that helped stabilize her conditions.  We decided to allow her to live as a child and not as a prisoner; as much as reasonably possible.

Swimming - A big no, no!  Yet, she can swim for up to 30 minutes at a time in an unheated pool while on her meds.  On a 100 degree or higher day, she can swim for an unlimited amount of time.  We still have to go through a routine when she comes out of getting her dried off immediately.  However, she got to be involved, she got to be a child. We even take trips to the beach (rarely) where we just sit on the beach, no swimming.  She still gets the excitement of building sand castles and digging holes in the sand, chasing the birds.

Sports - This one is a biggy.  It impacts her on every front.  However, with the support of those in charge, modifications, sports can be safe.  We chose to allow TLC to participate in the Miracle League.   She is able to play baseball each spring.  With her team, kids can play when they are able and don't have to worry when they can't.  If TLC has to leave mid game, she can.  No problems.

Shopping - The doctors were completely against us buying a wheelchair for our daughter who has Orthostatic Intolerance with severe blood pooling and Ehlers Danlos.  However, since we bought it, she has been involved in every facet of life, once again.

Trips out of town - Wow this is a big one.  Put in someone else's care when we as parents cannot be around.  This one is still hard, because it depends on the willingness of those in charge of watching the kids to ensure her safety.  Some just don't get it.  But if you get to send one off with your child that gets it - WONDERFUL!  If we don't have enough faith and can make the trip, we will go with her on out of town trips.  She doesn't make every trip, but some.  ANGER ALERT!  We as parents should not have to be with our child on every trip because other adults don't want the worry.

In every case we are careful.  We plan and strategize and prepare for safety, but we choose to live, we choose to let our daughter live.  We gave our daughter her life back.  She is okay with it and understands that there are consequences.  She accepts the consequences from overdoing it.  But she is happier - she gets to be the child (ahem - teenager) she was meant to be.

Ask Me a Question and I Will Tell You No Lies

Other people's reactions to our coping mechanisms for my daughter's conditions are expected, they are welcomed, they are innocent, but it does not change how they can sometimes embarrass us or remind us of how imperfect we are.

Several years ago, I was the family provider for my husband's grandmother.  I had a wonderful job that allowed me to take off quite easily when needed.  One day she was taken to the hospital.  We got up early in the morning to make the two hour trip to the hospital.  We took care of all of the paperwork and asked the questions that were needed and got her taken care of.  At one point, a nurse walked in and saw my daughter all curled up in a chair attempting to go back to sleep.  She made a big deal about it.  She was loud and got other people involved in the moment.  She reminded my daughter how young she is and that children of her age should be bouncing with energy. To any other child in any other family, everyone would agree, chuckle and move on.

My daughter's condition demands much of her energy and time. The autonomic nervous system controls the balance of control in the body.  It generates energy at the right moment, for the right amount of time.  It also saves energy, keeps the body from expending too much energy.  When it is time to settle down, it sends out a signal that says, "Hey cool it."  The body responds appropriately.

With Dysautonomia, this system is broken.  For my daughter, TLC, she never has enough energy for any task.  Her body is always wanting to sleep.  Most days she sleeps between 10 and 12 hours.  Sadly, this is never quality sleep.  Yes, yes, yes!  I know what you are thinking.  Too much sleep can also make a person tired all the time.  You are right!  But that is not the case here.

I used this as a teaching moment for my daughter, to remember how special she is.  I reminded her that people like this nurse just don't know, it was an innocent response.  She would have never said anything had she known.  It is moments like these that we can teach others and bring awareness.

If you see someone doing something different, ask them why.  Ask them about their condition, don't be afraid.  We welcome people that want to learn, know and understand.

A Devotion from IntentionalLiving.com

Lord, you have been our dwelling place throughout all generations.
Psalm 90:1 NIV

Looking for Shelter

When horrible tornados and hurricanes rip through communities, people look for safety in storm shelters.

That's the way it is for those who follow Jesus. There are times when the very nature of life feels like one big storm after another. It's like the power is out, and the lights are off. 

Are you facing a storm today? Remember that this world is just a temporary place. But God is your refuge--your dwelling place yesterday, today and tomorrow. He is the One who created you, the eternal God who fully sustains you, carrying you through this world and into everlasting life.

You can draw closer to Him enjoying safety in any storm.

Today's One Thing

Choose to rely on God to carry you through today, remembering you can trust Him!

Go Deeper

Psalm 90; Psalm 71:1-6; Isaiah 32:18-20

Credit:

Intentional Living with Dr. Randy Carlson - www.intentionalliving.com daily devotional on 3/8/13 

http://archive.aweber.com/edevo/J_BXw/h/He_s_got_you_covered.htm 

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

Not just the person with the chronic illness suffers; the family does too.

One thing that I share with people around me is that not just my daughter suffers from this condition, but our family does too. My daughter's condition came on suddenly. We were encapsulated in a shell that had no name and no road map. We went from doctor to doctor trying to find out what was wrong. Some doctors meant well and treated her well and some just laughed at us. We kept wanting to come out of the bubble, but we couldn't until we knew what this condition was. Then after nearly a year of dealing with our whole world turning upside down, I finally figured out the connection. We had a name, we knew how to treat it and we knew there was some hope that it would go away. But for some reason that bubble didn't go away.

I worried for her, I coped for her, I prayed for her.  There were issues she did not have to deal with, but as her parents we bore the burden for her.  I made the doctor's appointments, I dealt with the canceled doctor's appointments and the doctors that dismissed her because they thought this condition didn't exist.  I had to convince doctors that my daughter's medicines were doing more harm than good, or that the meds were not working.  I had to deal with the school system.  I had to keep her grades up and stay out of jail because my daughter was missing so much school.  I had to teach my daughter how to handle the teasing and bullying, not just from her peers, but from the administration, from her teachers.

Our lives changed too.  We now have to take our daughter every where she goes, for her safety.  She can no longer go outside alone.  She cannot go inside a grocery store and if she does even for a minute she had to stay away from the refrigerator cases and freezers.  We have to miss a lot of work to pick her up from school every couple of days.  When she leaves school she has to go to work with us to keep from missing more work.  We miss work to take her to the doctors office every few days, weeks and months.  When one doctor can't help, I must have the foresight to take her to another doctor.  We have to make the decision to allow a surgery that may be a cure.  We have to make the decision to not allow the next surgery because it may be too dangerous.  ER technicians have to be convinced that there is such a condition and that they must warm all IV fluids prior to infusion.  Yet when they forget, we then have to be there by her side to help her cope through the pain, the burning, the itching. We must forever remind our friends, her teachers, her spiritual leaders and our family that what is comfortable for them, just may be too cold for her.

As time goes by we must realize that our daughter is not going to get any better, this is permanent and our daughter is handicapped.  That my friends was the most difficult realization for me and my husband.

Remember,family members have a second-hand suffering to chronic conditions. I hope we all can find peace and help each other cope not just with the CU, but the grief, the embarrassment, the not knowing, being in the mode of constant damage control.

Innocence Lost

We first realized that my daughter had Cold Urticaria when she was eight years old following a severe reaction. We attended many doctor's appointments, subjected her to many tests and a surgery that was intended to help but did not. TLC dealt with many reactions that caused much pain, burning and itching. Some doctors laughed at us when told that she was diagnosed with an allergy to cold. Teachers were impossible to deal with. It was difficult on TLC with the development of relationships with her friends. She could not go out to places they did or do some of the things that they did.
 

One night while scared of a storm, TLC crawled in bed with me. We talked a while and sat quietly for what seemed forever. Then the question that pierced my heart, the one I will never forget, she asked, “mommy, if moms know everything, why don't you know how to fix me?” I was broken hearted, because I tried my best to get answers, a diagnosis, a cure. I was broken hearted, because I felt as though I had let my ten year old down. After a few moments of tears and silence, all I could tell her was, “you know, I used to think that doctors knew everything too.” Her innocence was gone, so was mine.

A New Normal

Having a chronic condition presents many challenges. From the onset of symptoms, to the sometimes elusive diagnosis to the management and coping with the condition, sufferers have many battles to contend with. When it comes to physical urticarias, one of these is acknowledging and accepting that the condition represents a new normal.

In my daughter's, TLC's, case she woke up one spring morning preparing to go to school only to end up in the emergency room by 8:00 a.m. She was covered in hives (both wheals and welts) on her arms, legs and face. The reaction started out mild with red bumps and itching. It wasn't until she uttered the words, "Mom, I have never felt anything like this before." did I understand that this was more than a simple reaction. My first thought was that it had to be the Chicken Pox. On our way to the doctor's office she had so many hives that she looked as though she had slept in a bed of fire ants or mosquitos. Her doctors would not be in for another hour. We headed to a doc-in-the box. By this time she was having trouble breathing and struggling with every breath. We go into the doctor's office and sit and wait, and wait and wait. Before you know it, half of the reaction is gone; it had cleared up as though it was never there. The doctor provides a cream and sends us on our way. On a daily basis, the reactions return, sometimes multiple times a day. They come and they go and we have no idea why. It took eight months to realize that the only connection to her reactions at home, school, church, the grocery store, outside, and in the car was the temperature. We go to the doctor; he confirms the diagnosis through an ice cube test and tells us that there is no cure. We are informed that most children will grow out of it within three years.

After months of reactions, having to leave school three to four times a week, seeing doctors of multiple specialties, being laughed at and ridiculed, and realizing that there was no cure, we had to accept that this was our new normal.

The best treatment for CU is avoidance of the cold. I don't care if you live in the Alaskan Tundra or in the everglades of Florida, you cannot avoid the cold. Ambient air below 70 degrees Fahrenheit will trigger a reaction. Air conditioned buildings and cars will surely manifest into a nightmare. Drinks with ice cubes, ice cream, swimming pools, and that light cool breeze on a bright sunny day will all cause a reaction. The body itself does not have to be cold; it only has to come in contact with something cold to develop a reaction. Even sweat, the body's own mechanism for cooling down when hot, can trigger a reaction. How do you avoid all this? Do you lock yourself in a room with a heater constantly running and no air? No, you resort to the next best thing...medication, antihistamines that is. Well, unlike a pain reliever to a good headache, they don't work all the time. And, you have to find the right antihistamine and in most situations the right combination of antihistamines in order to prevent only 90% of the breakouts.

Our new normal?  Wear a light, breathable jacket every day of the year, everywhere. Wearing knee high boots to keep the legs as warm as possible. Our home kept at 72 degrees or warmer every day. Have a contingency plan when the heat fails during the winter. Homeschool because the schools refuse to work with your child's illness. Consume all drinks, yes even sodas and the ever famous southern sweet tea with no ice. Only eat warm meals. Carry a heater from class to class in front of all your junior high friends. Never wear shorts ever again. Only swim in a pool on days that are 100 degrees Fahrenheit or warmer and jumping out and getting dry immediately thereafter to keep from cooling off. Buying a car that heats not just the air in the front of the vehicle, but the back of the vehicle independent of the front and the seats. Carrying packets that when activated become very hot. Though my daughter cannot use an epi pen for health reasons, others have to be ready at all times trained and ready to use it. Deal with changes in meds because the drug company no longer supplies that one antihistamine that worked so well. And, listening to people (teachers, pastors, doctors and friends) laugh at you when you tell them you are allergic to the cold.

During the process of learning about this condition – mostly by trial and error - we went through a process of grieving. Not just for my daughter, but my whole family, our lives had changed; it will never go back to the way it was. We will never be able to do things that others could do like swimming in the ocean, or just going into the grocery store. It was like watching a good friend passing away, telling them goodbye only to be forced into making friends with someone you really don't like just because that is your only option. We had to acknowledge and accept the change; we had to move on with the change in place.

Our new normal involves keeping TLC warm at all times, being strong emotionally and working around whatever road block stands in our way. We will have a normal life; it will just be a new normal.