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.

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 

So you think your child may have Dysautonomia?

Though I am not promoting self diagnosis of your child, I do support empowering parents with knowledge and knowing how to move forward when wondering if their child may have Dysautonomia.

Dysautonomia affects the autonomic nervous system (ans).  Dysautonomia can be presented differently in each person that has it, even for identical twins and between parent and child.  The information I present will be based on my daughter's reactions and some of the most common reactions that can occur.  Dysautonomia is not a diagnosis on its own, but a consortium of diagnoses for conditions related directly to the ANS.  Having one or two of these issues does not point toward having Dysautonomia, but having several can lead you in the right direction to a specific diagnosis.

It is very rare for children to have Dysautonomia and never diagnosed prior to the teen years.  Only recently has my daughter's doctor started diagnosing children as young as nine years old.

We knew that our daughter was different as a new born, but could not connect these differences to anything in particular.  As far as we knew, she was perfectly healthy and had symptoms that other babies could have.

Sleeping Through the Night
Our first clue that something was different was that she was sleeping for four to six hours as a newborn. The doctor complained about her sleeping more than a couple of hours at a time and the need to wake her up and feed her.  It was difficult to wake her up and when she did wake up, she would eat very little or not want to eat.  I knew that this was not right, but she was hitting all of her growth and weight milestones.  Well, weight was an issue as she was in the 10 percentile, but the doctor said not to worry as she was gaining weight.  As she got older, she began sleeping up to 15 hours a day.  This was not the normal pre-teen/teenager stay up late and sleep all day.  She would sleep all night and all day.  This was diagnosed as Hypersomnia.

Blue Legs When Held Up Right
Our second clue was that she had blue legs when held upright.  As soon as she was returned to a non-restrictive recumbent position, the blueness went away. At first I thought that people were holding her too tightly and cutting off her circulation.  However, it happened even when I held her.  I quickly learned to always hold her (as a baby) in the recumbent position.  As she got older, we lost track of her legs being blue, but about the age of 10 we started noticing it again and realized that it was the same issue as when she was a baby.  We have come to know this condition as Acrocyanosis.

Projectile Vomiting
Another prominent problem was projectile vomiting. No matter how she was fed or what she was fed, she always vomited her food clear across the room. Even as she grew older she continued to have vomiting after she ate. By the time she was three, it was in better control, it did not happen with every meal; however, we never knew when it would happen.  As a baby, she was test and diagnosed and treated for Pyloric Stenosis.  When she was older, she was diagnosed with Gastroparesis.
 
Early Satiety
In conjunction with the vomiting, our daughter had an inability to eat a normal amount of food, this is called early satiety. She could eat a very small amount and would stop. If she ate too much, she would have stomach cramps and begin vomiting.  We were turned into DHR when she was a year old for child abuse because she ate so little. This was one time that DHR did an investigation and found no signs of abuse because she was on the plump side and well cared for.  This was related to the Gastroparesis mentioned in the previous paragraph.

Frequent Infections
Our daughter had frequent bacterial and fungal infections that affected her ears, her urinary tract, her digestive tract and her skin. She frequently had mouth ulcers, ringworm, and upper respiratory infections.  She has had the flu twice, once when she was three weeks old and the second time when she was seven years old. However, though being heavily exposed to the flu on several occasions she has not had it in the last eight years and she has not acquired the chicken pox.

High Heart Rate
A child's heart rate is much higher than that of an adults.  For a girl, it is typically around 140 when born and for a boy slightly less.  I did not notice any issues in her heart rate as a baby; however, when she was seven or eight, I started taking notice that her heart rate was not coming down.  It was a couple years later before I started asking the doctor about her heart rate.  At the time, they would tell me that it was at the high end of normal, but still normal.  Each time they took her pulse she was sitting down.  About a year later, I found out about POTS and asked the doctor to take her heart rate both sitting and standing.  The nurse that took her pulse could not get it while my daughter stood up because her blood pressure dropped.  Once she found the heart beat could not believe that it was so high and declared that the equipment was broke.  I reminded her that she could take a pulse manually.  She did, again and declared that nothing was wrong.

Low Body Temperature and Low Blood Pressure
Our daughter maintained a low body temperature around 96 degrees.  She also maintained a low blood pressure (90/50 average).  We really did not know about this until she was in her preteens when the doctors we visited started recording them by our request.

Leg Pains (Not Growing Pains)
From the time that she could stand and walk, she always wanted to be carried. She complained of her legs hurting.  She never wanted to go anywhere for fear of being there a long time--standing. Everywhere she went, she was slow, always last and took forever. We thought she was being social or too chatty. It turns out it was always a delay tactic. Delaying the inevitable, standing and walking.

We were somewhat oblivious to there being a problem as she began dancing at two years old and continued for years. She was always active. One day when going through pictures from our church's VBS program, I noticed one picture in particular where she was outside at a table with one of the leaders working on a project while the rest of the group was playing competitively in the adjoining field. I asked her about it and she could not explain why. That is when I started worrying what was wrong.

At this time I started noticing more of her complaints regarding her legs, her sitting down more often, avoiding trips to the store, and taking breaks at dance.  By the time she was eleven, she struggled in dance and began spraining joints regularly. This is when we started taking her to the doctor to figure out what was wrong. By the time she was twelve, she was in a wheelchair. Her dreams for dancing were dashed.  When she was in her teens, she received a diagnosis of Orthostatic Intolerance.

She was early for all her milestones except walking. Though she was not terribly late walking, it was the last one attained and late compared to all the others.

No sweating
Most babies don't sweat and usually don't start until around puberty.  Our daughter never did sweat, even as a competitive dancer who practiced for six hours a week.  We later found that she had Hypohydrosis.  It was specifically because of this condition that we eventually found out by our daughter having Dysautonomia.  For others, there can be an issue with excessive sweating, in our case, it was the opposite.

Other Possible Clues
I don't know if these are clues of her condition; however, they were very unusual. She was very alert as a baby, even in the first few weeks, it was like she was studying everyone and everything.  She did not cry very often and was very easy going.

Just and FYI -
There are many more conditions and symptoms related to Dysautonomia including migraines, passing out, sensitivity to sound and light, muscle weakness (floppy baby syndrome), etc.  Research everything you can and if you believe that your child has Dysautonomia don't stop going to the doctor and getting the right answers.  We only found out when realizing that my daughter's diagnosis for Cholinergic and Cold Urticaria did not address all of her problems and kept telling the doctors that she did not sweat.  It took 12 years to get their attention and a confirmed diagnosis and an additional three years to get a successful treatment for many of her issues.

My daughter not only has Dysautonomia (Orthostatic Intolerance and POTS), but also has Cholinergic Urticaria (Exercise and Heat Induced), Cold Induced Urticaria and Ehlers Danlos Syndrome III.

First Step in Walking the Walk

>> Previous Post >>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 had completed the first leg in our journey of Walking the Walk.  A week ago Monday, we visited the Dysautonomia Clinic.  Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later.  One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in.  We were the first ones there, but we made it.

We all went into the nurses office.  She asked many questions, some no's, but many yes'.  As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing.  Her dad and I remained in the waiting room until the testing was completed.  Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not.  It left me a little nervous.

The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor.  In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time.  He was in his 70's a little feeble looking, he kept asking some of the same questions over.  I allowed my daughter to answer all the questions that she could with out me interjecting.  However, there were times the brain fog crept in.  It was difficult for her, she was either confused or forgetful.  I answered when I could.  I soon realized, he was testing her brain fog.

On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176.  Based on the testing, we found that her current heart medication was not working.  Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication.  He calmly explained the change and that most with DYS respond well to the Beta Blocker.  He also suggested two other medications.  One she had taken before which would both help her sleep and also prevent the jerks.  The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.

He wants us to follow up with him and keep him aware of how she is doing.  He knows the meds may have to be adjusted and is willing and ready at any given time.  He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.

We are now one week out from the appointment.  The first full night of meds was like a miracle being performed.  TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up.  This has continued every morning since.  Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks.  She did not know what to do to fill all this extra time she is awake.  Not just up and moving around, but truly AWAKE.  The first day she talked nearly non-stop.  That has stopped, but she is once again like a "normal" person.

Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.

Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold.  We give so little, yet ask so much.

Thank you, Lord, for your many blessings.  We love you and remain faithful during the difficult times and we choose the same during the good times.  May we continue to honor you in all we do!

A Beauty Quickly Fading

This journey is not ours alone.  It is shared.

A couple years ago, we met a beautiful young lady.  She was at the State Fair in a booth showing/advertising her well trained dog.  She was part of a program that trained dogs for therapy, her standard poodle was her therapy dog.  This young girl had E. B.,Epidermolysis Bullosa.   Her arms and legs were wrapped for protection.  Her dog was there for her support.  But she didn't just take, she gave back.  How courageous she was to be seen at the fair looking "different" than everyone else, standing out in the crowd.  She had spunk and energy that did not waiver.  She suffered a great deal of pain that no one could take from her.  Despite this, she showed courage, strength and a giving nature.  This is where beauty comes from, it comes from how we handle our situations in life.  We can be courageous or we can be cowards.  Which ever path we choose, it will shine through on the outside.

I am so glad that even though I did not get a chance to know her well, I was able to share the journey with such a beautiful young lady.  Her life was cut short.  May God bless her and her family.

 Has your life beaten you down? Are you a beauty that has faded? Or, do you choose to beat your circumstances down?  Do you refuse to fade, but to stand out in spite of all else?

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!

Enjoying the Simple Things Amidst the Chaos

We have had so much going on in the last few days.  We just wanted to share with you another step along our journey of dealing with Dysautonomia, Cold Urticaria and Ehlers Danlos.

People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer.  Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.

Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.

Recently, we were invited to a suite view of our local baseball team.  We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect.  As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in.  Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive.  We made it...through the whole evening of activity and enjoyed it all.

Last night we had the opportunity to go to the Capital Sounds Band's summer concert.  We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud.  The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave.  On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music.  Unfortunately, it smelled like a bathroom so we left at intermission.  We enjoyed what we could and we were content as it was more than what we can usually participate in.

Later in the night there was an attempted home invasion.  Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit.  For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.

Borrowed from Wikipedia

"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."

My description:
Jerks are like giant hiccups.  They can affect just the head, arm, leg or they can affect the whole body at once.  TLC has had it affect the whole body.  But yesterday, it was just in her neck.  It is terrifying and can be very painful especially when the jerks are hard and sudden.  For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.

We enjoy life and are content with the little we can be a part of.  Check out the post previous to this one and you will see why.  Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity.  May you be blessed and enjoy the simple things in life.

Then your light will break forth like the dawn, and your healing will quickly appear; your righteousness will go before you and the glory of the Lord will be your rear guard. Then you will call and the Lord will answer; you will call for help and He will say: "Here am I." Isaiah 58:8-9

 

The Healing Cancer is a tough disease—not just for the person who has it, but for their family also. When first diagnosed with it, many people feel their life is over. Although family and friends try to make life easier, it’s still hard for them to fully understand the pain the person goes through, both physically and emotionally. Often, the person with cancer can feel like they’ve hit bottom and have only two choices: give up and die, or rely on God for their healing. That was the case of the woman with the serious bleeding problem in Matthew 9:20-22. Having had this condition for over twelve years, she knew she only had two options and she wasn’t willing to die. Instead, she put her faith in the One who claimed to be the Son of God. Having faith in Him, she stretched out her hand and touched the hem of his robe, and was instantly healed. Did his robe have some magical healing power? No. Was her healing caused by something she did? Yes…but only in the sense that she—having no other option—reached out to the only one that could save her. Her healing finally came after many years of searching. God can use people in the medical profession or He can do miracles. You can trust Him to heal you, no matter how long or what form it takes. Ultimately, God wants to heal you as much as you want to be healed. Once you trust the One your healing comes from, you will not be disappointed! Today’s One Thing Although God often uses man to heal, trust in God alone for perfect, complete healing. Going Deeper Jeremiah 33:6; Malachi 4:2; Luke 6:17-19; Revelation 22:1-3   This is shared from an email that I received from IntentionalLiving.com

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

The Uncommon is the New Common

Helping others understand your symptoms with a rare / invisible condition is difficult.  People know what they know.  They understand enough about symptoms, dangers and life style modifications of common conditions like diabetes, migraines, asthma, flu, chicken pox, etc.  They have experienced these conditions or know of others that have.  They have been exposed to common conditions so much that when told the name of a common condition, nothing further needs to be explained.  The person asking grimaces, says, "sorry man," and thinks to themselves how lucky they are to not have it.  But they know.  They know because they have experienced it either directly or indirectly. 

On the flip side, people don't know about Cold Urticaria, Dysautonomia or Ehlers Danlos (and many other rare conditions).  You start describing these conditions and the one you are talking to will walk away totally confused.  You suddenly use words they have never heard before.  You present them with concepts that are foreign.  They cannot wrap their mind around what you give them so some will revert to thinking you made it all up, that you are lazy or a hypochondriac.  If you are the parent of a child with an uncommon rare condition, they think Munchhausen by proxy.

The sad thing is that we cannot even refer individuals to medical websites, because the information provided is so basic and unclear.  These are rare conditions, not much research is provided because they are rare, doctors are still testing theories and not always providing good answers.

Something you won't see on a well qualified medical website for cold urticaria is that it is common for patients to have a low body (core) temperature.  It is common for suffers to deal with severe malaise, exhaustion and daytime sleepiness.  The affected person does not stop suffering when the wheals or welts are gone.  There is an attack on the body and its ability to adjust to the circumstances.  There is pain, tiredness, burning, confusion, migraines, shock, stress, and so much more.

Next time you see someone with a rare condition, realize you don't know everything, neither do the doctors or their websites.  Learn to trust the patient.  Expand on what do you know, learn something new, and help the person with the condition function as normally as possible.  Realize the uncommon is the new common, there are many new illnesses.

A New Normal II

Our daughter developed a condition that took a long time to put a name to.  We found the name, but like a puzzle piece, we had more puzzle pieces that did not fit the picture that the doctor was painting for us.  There were pieces left over, but there were holes in the picture too. We found out that she had an allergic reaction to being cold (Cold Induced Urticaria - CU).  But there were more symptoms.  We only had a portion of what was needed to figure out what was going on.  With each doctor visit we saw new symptoms, with each visit we would find another piece to reconcile with.  Four years following her initial issues with CU, we finally find out that she has not one rare condition, but two.

This second condition involved the autonomic nervous system - Dysautonomia (DYS).  We later figured out that she had this condition since she was born.  You see DYS is not a diagnosis unto itself, but used when you don't know the specific form.  We are still on our journey to figure out which one.

The most prominent symptom was pain in her legs when standing.  The pain was relieved as soon as she sat down.  Every since she could stand/walk, we have known about this pain.  I picked her up and carried her up until she got too heavy at eight years old.  We battled daily with coaxing her to suck it up and move forward.  Sadly, we did not understand her battle.  It took until she was eleven or twelve to vocalize what was happening to her legs, that she had excruciating pain, burning and pins/needles all through out her legs when she stood up.  At some point we realized that her legs were turning blue.  This was the only outward-appearing visual sign that something was wrong.

Between first and sixth grade, we as parents and her school made many accommodations for her.  We no longer took her shopping at the grocery stores with us.  We only went places with her that required very little walking.  Though she was able to dance for nine years, each of the latter years were always a battle.  The very last year was hardest as we and she had to finally except that the discipline had become too much for her abilities.  She had to quit mid-year what she loved the most.

By the end of sixth grade, she would transition from elementary to junior high.  She would go from a facility that required little standing/walking and was able to work with her every need to a facility that would require much of her.  Some dear friends knowing the system informed us of programs available to meet her needs such as developing a 504 plan.  In planning for this program we had to look forward to the possibilities that lay ahead.  One of those possibilities involved use of a wheelchair and many accommodations.

The first day of junior high had such a negative impact on her that I took her to the drug store the next day before school and purchased a new, manual wheelchair.  It was just supposed to be temporary until we could find that magic cure or treatment that would get her back on her feet.

The wheelchair turned out to be a wonderful choice.  Our daughter was able to freely move about and accomplish many things that she could not before.  She gained independence from us and from the confines of our home (her prison).  Her world of possibilities opened up.  We had another dear friend that suggested that she try out for the Miracle League.  This is a program that allows people of any age and of any disability to play baseball.  The game was modified for the players abilities, but the fun and joy they received playing was priceless.


 It probably took three years before we realized we had to embrace our new normal.  But now suddenly, we had to embrace another level of acceptance, our daughter being disabled - handicapped.  These are not dirty words or bad words, but they are words that nobody wants to use to describe of themselves or a family member.  We felt like we were giving in to the condition; that we were no longer fighting for the hope that we were so desperately grasping onto.  But once we accepted it, we were able to move forward.  We were able now to advocate much more strongly for our daughter's needs.  We were now free of our prison (labels mean nothing).

Our daughter is now a thriving young lady and we are a much happier family.

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.