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.

What Cold Induced Urticaria Looks Like

All of these pictures are of my daughter and her reactions to temperatures that are colder than her.  Her diagnosis has changed multiple times with the most current being stated as Chronic Cold Induced Idiopathic Urticaria with Angioedema. Basically this means that she has an autoimmune inflammatory allergic type of reaction caused while in the cold.  The pictures below are all of different ages.  When I say cold, I am not necessarily speaking of freezing temperatures.  A person with this condition has a low threshold for temperature tolerance.  In my daughter's case, anything colder than her can cause a reaction - even sweating.  Her threshold during the winter is based on any temperature below 70 degrees.  She can breakout while outside, and inside in air conditioned buildings.  There are other symptoms which cannot or should not be displayed here such as asthma, anaphylaxis, extreme tiredness, headaches, low blood sugar, dehydration, low blood pressure, low body temperature, vomiting, stomach pains, flushing appearance, and other forms of urticarias.  For my daughter, she is allergic to both heat and cold.


One of the first identifiers that a reaction is about to begin is that her face loses most of its red or pink coloring.  The bottom eye lids turn a purple color.


       





Red flares begin to show on her ears, face, and joints; elbows, knuckles on her hands, knees and ankles.  Starting on the joints only are not typical for all sufferers of Cold Urticaria.










Here is how they appear on the elbows when they first begin to swell just prior to becoming wheals.







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People with this condition do not have to  be cold to breakout.  This welt was caused by direct exposure to cold air.

Warm sunny days with a light breeze can cause a reaction on exposed skin.

Skin not directly exposed to cold can also have a reaction.

With a large enough reaction, it can look as though the person was bit by many mosquitos or fire ants.  It feels the same way too.  Reactions on the surface of the skin starts with a burning sensation and then added to that is intense itching.

Eventually, when exposed long enough, swelling occurs in the affected area.









Though my daughter's reaction typically begin on the joints, the reactions spread to all areas in between.  Every area of the body is affected.

The appearance of the reactions can change in appearance depending on the type of medication taken to prevent them.  As you can see in this picture, some people may have an associated discoloration (blue tint) to the skin during a reaction.  Some can be much more severe than this.







This reaction originally looked just like the pictures of the arms above, completely covered.  After dipping in a warm bath, this is what the reaction looks like as it goes away.

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 This is angioedema.  The difference is that the reaction is deeper in the tissue (where there are no nerve endings).  These reactions do not itch or burn and they don't go away for more than 24 hours.
Again, you can see the blue tint in the skin.  In this case, it is known as Acrocyanosis.

These reactions are flat, they don't wheal up.  In my daughter's case, they usually had a white halo around them.

After the reaction goes away, a scarring effect occurs.  These are like water stains left on a table after a glass is removed.  These usually remain for a couple days until full healing has occurred.

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