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.

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/

Medicating for Cold Urticaria

No one medicine that you or a child can take on a daily basis will prevent you from breaking out to cold once you have CU.  As a matter of fact, researchers have found the best outcomes come when mixing two or more (H1 and H2) histamine blockers.  They have also found a marked improvement in reactions when Singulair is combined with at least two antihistamines.  In English, H1 blockers are your everyday antihistamine allergy meds.  H2 blockers are antacids. 

In most studies, they have found that Cyproheptadine (Periactin), Hydroxizine (Atarax) and Montelukast (Singulair) provide the best control on the majority of patients; however, doctors never start out using these meds due to their side effects.  For children, doctors will start with over the counter meds and preferably with non-sedating meds like Claritin and Allegra.  For individuals with more complex reactions and/or are resistant to these meds, doctors start working their way to more powerful meds and those that are sedating. 

Any given combination that works for one person is not guaranteed for another person.  If you don't find what works for you keep working with your doctor to try other combinations.  As a child grows, they will out grow their dosing, so if a med stops working, talk to the doctor and find out if doses can be increased or determine if your child needs a new med.

Also, when a medication causes drowsiness, a doctor will usually suggest you or your child taking it before bed time; however, some will experience the drowsiness at the time of waking up or early in the morning as the medication is wearing off.  You may find moving the time the med is taken to earlier in the day (2 hours earlier) so that the wearing off of the med occurs during the night, the child will feel much better in the morning.

In our experience, no medication and no combination of medications prevents all reactions; however, the difference in what they do prevent is the difference between being functional and non-functional.  Preventing reactions is a multi-tiered approach involving medications, preventative actions in where you go and how you dress and knowing when to just say, "no, I can't do it."

Section 504? Students with Disabilities in the United States are Protected by a Section 504

Section 504 — just what exactly is it?  
You've probably heard about it, but every school district addresses Section 504 in a different manner. Some districts have even been heard to say, “We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional.

What is Section 504?
In the United States, section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.

Who is covered under Section 504?
To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability).

Who is an “individual with a disability”?
As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” Based on the third option, you can have a chronic condition without a name and still qualify for accommodations.  This is important for parents who are waiting to see a specialist and/or are having a hard time getting a diagnosis.

What is an “impairment” as used under the Section 504 definition?
An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities”
Many students have conditions or disorders that are not readily apparent to others. They may include conditions such as specific learning disabilities, diabetes, epilepsy and allergies. Hidden disabilities such as low vision, poor hearing, heart disease or chronic illness may not be obvious, but if they substantially limit that child’s ability to receive an appropriate education as defined by Section 504, they may be considered to have an “impairment” under Section 504 standards. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students.

Can a teacher, principal or district refuse to provide you a 504 meeting?
No!  A 504 determination meeting is usually organized by the school counselor and is handled as a committee.  Once you request a 504 determination meeting, there has to be a meeting.  No one individual can refuse your meeting.  The committee as a whole will determine based on your child's presentation whether or not to move forward.

When can you start the process of a 504 meeting?
Any time that school is in session.  It is much harder to have a meeting the last week of school, but it can be done if you determine that your child has a need and this is the first you learn of it.

What is the difference between an IEP and a 504?
My explanation is very basic and will not cover all the differences.  Typically, an IEP is for a child with an intellectual learning disability and a 504 is for those with a physical disability.  However a child with both intellectual and physical disabilities only need to have an IEP which will cover the 504 needs.  A 504 is legally binding upon your school district just as an IEP is binding.  Don't allow anyone to convince you otherwise.  Attitudes and support will change from one school to the next and one teacher to the next.  If a teacher and/or district refuses to follow your 504 plan, you can follow their chain of command straight to the Board of Education, Superintendent and Governor if necessary.  When all else fails, get a lawyer.  When that fails--Homeschool.  Sometimes the fight is not worth it.  The district will suddenly want to help you when you leave them.  This is because your child is worth a lot of federal dollars to them, but only when enrolled.  You have to decide if it is worth it to stay or go.

Will the school district voluntarily offer services for your child?Usually not.  You have to know what you need and ask for it.  Keep in mind that with a rare condition that they have never heard of, they don't understand what the child will need.

When can you start planning for a 504 meeting?
 If your child is in preschool and you are looking to the future and planning ahead, this okay, go ahead and get your school district involved.  School systems receive extra dollars from the federal government to identify children early and to help prevent learning difficulties. Despite this, they can be reluctant to do their part so be ready to push and be the squeaky wheel.

Where do you start?
Start with the doctor, ask him/her to help you with your 504 letter.  They will stipulate in the letter what needs your child has and what types of accommodations need to be made.  However, not all doctors understand the 504 process, what needs to be included or how specific they need to be.  You can write an accommodations report for the doctor and ask them to review it, make necessary modifications and sign it.  Be honest in your assessment though and don't ask for more than you need.  This can only hurt you later on. Once your child is identified as being on a 504 plan, that designation follows them all the way to college.  Once this is approved, go to the school counselor and request a Section 504 meeting.  They will know what you are asking for.

What happens when the child's needs change?
You change your 504 plan.  You can request an update meeting at any time through out the school year.  Modifications can be made.  You should always have a meeting at the beginning of the school year and again at the end of the school year.

Impairments for those with Cold Urticaria
Listed below are considerations to be taken for children with cold urticaria.  Depending on severity of the symptoms, you may not need to address certain items, but select the ones that are most important for your child's needs.

In our state, you must declare in your 504 if you anticipate your child missing an excessive number of days throughout the year for being sick.

• At no time should your child be separated from or be made to stand out from other children in class unless there is no reasonable accommodation.
• Should the child be injured in such a way to cause swelling, DO NOT apply ice.  A compression bandage can be applied and elevating the effected area.  Call parents if severe.
• If CU symptoms are severe, all teachers, not just child's teacher, substitute teachers, hall monitors, security officers, office staff, nurses and bus drivers should be made aware of child's condition and how to protect child from excessive exposure.
• When excessive absences are necessary, request to have a tutor come to your house to help your child.  This will give you home bound status.
• Request a set of books to stay at home so that when there are absences, you can get your child's assignments and help them with their work while out.  Especially if you don't have home bound status.
• Spell out the signs of an impending reaction and other co-reactions such as Asthma like symptoms, Reactive Hypoglycemia, Excessive Tiredness, Headaches, flushing, scratching, nausea, vomiting, diarrhea, confusion, listlessness etc.
• Let them know that child can be reactive to cold without actually being cold.  This can lead to child overheating when applying additional layers of clothing or wearing coats in the class.
• Standing outside in the cold/wind/rain - 
• School should allow child indoors before school starts when other kids are not allowed in before a certain time.
• School should allow child indoors after school when waiting for a parent to pick them up when weather dictates.
• At no time should child be outside when temperatures are below______ degrees, when it is raining or has recently rained (still wet) or is windy.
• A special needs bus should be arranged to pick up child to and from home and climate must be well controlled.  This is necessary for field trips as well.
• Child should be allowed to either a)remain inside with a teacher during a fire alarm, or b) be allowed to go to a neighboring school/business or c)allowed to sit in a teachers heated car.
• Child cannot participate in outdoor activities during Physical Education class when temps are below __________, when raining or when breezy.  Alternatives can be established in place of PE such as staying in the Library, Office or helping tutor other grades in another class.
• Classroom / Indoor expectations
• If the child is reactive during the winter or summer with the A/C and the school does not allow coats indoors, request that the child be allowed to wear jackets, coats, mittens etc. indoors to prevent a reaction.
• Establish that a portable heater should be used in the class and that teachers and other students do not have the right to commandeer the heater for themselves.
• Teachers should not wait for child to ask for help, they should provide it!  Younger children don't always remember to put on a coat/mittens, take their meds or avoid certain areas without being reminded.
• Rooms with water leaks allow for dampness and excessive moisture in the air. Broken windows, older buildings and portable buildings tend to be drafty and hard to control climate wise and all should be avoided for child's wellbeing. We have requested that my daughter be transferred to a school that was new built over the older buildings which were very drafty and had insufficient heat and air control.
• Let them know the minimum temperature for the child and how the classroom temp should be set.  Some kids have a minimum of 10 degrees; however, other kids can have a higher limit.  My daughter's is 70 degrees.
• Teachers should supply an itinerary of what will be learned at the beginning of the school year and a weekly assignment list at the beginning of each week. This can be posted online or sent home to the parent in writing.  If the teacher so desires than can even use a smart phone to take a picture of the assignments that they write on the board and email it to the parents.
• Teachers should be talking with parents by email, phone or in person immediately when child begins having a decline in their grades.  Don't wait for report cards to determine there is an issue.
• If child has an issue with excessive tiredness at school and at home, a time limit needs to be set for the amount of homework that can be completed.  The teachers should accept what is completed and not expect it all to be done.
• Sometimes state and national testing times can present a problem for the child.  These weeks of testing are heavily controlled and prevent the child from taking meds on time and being able to leave the room if necessary.  You can stipulate that the child will be absent during that week and will be allowed to make up the testing.  Make up test times are not controlled and the child can have a snack if hypoglycemic, take meds on time and/or leave the room for a warm room if necessary.
• In the event a class is rewarded with an ice cream social, the school is to supply your child with an alternative.  Don't leave them out.
• After School activities and Field Trips
• In no way should a child be excluded from after school activities and field trips if their needs can be accommodated.  Find out how your child's needs can be accommodated and spell it out for them.
• Children should be assigned a buddy if reactions are severe and there are not enough adults to monitor the child. 
• Medications
• Specify what medications are to be taken, when and how.  In the event of an inhaler or Epi-pen you can even stipulate that the child retains possession of the meds and can medicate themselves if appropriate.  If maintenance meds are given and need to be taken at a certain time, this can be identified in the 504 as well.
• Provide child with a medical bracelet and let them know that the child has one and to contact you when needed.
• Let them know that the condition is known to get worse and kids tend to outgrown their medications which can lead to an adjustment period of changing meds and an increase in absences.

No direct access to the doctors
Never give the school nurse or school district direct access to the child's doctors.  All communication should go through you as the parent.  This is a new trend, but no where in the law are you required to give them access. I have seen this go bad easily. Nurses that talk to doctors get manipulative and your child gets fewer services than what they need.

If they do stress you for contact, you can give them a form stipulating exactly what they can and cannot ask of the doctor. The doctor should get a copy too. Such as, they can verify that the children are being tested and treated for Cold Urticaria and its related diagnoses, but no other information can be given out without a parent's written permission. The school system cannot refuse to allow attendance based on your refusal, this would be a violation of your child's 504 and ADA rights.

 

Emergency Kit for Cold Urticaria

Things that we carry with us in the event of an emergency on the road or out and about.

My daughter cannot use an Epi pen due to her high heart rate from the Dysautonomia.  If you have that, put it number one!

1.   Medical Bracelet - We use a USB bracelet that self installs on any computer.

2.  Information Sheet - We put all her diagnoses, meds, doctor names and contact numbers, allergies, special instructions such as warming all IV fluids, prior surgeries and other pertinent information for an Emergency trip to the hospital.

3.  A coat - this goes everywhere with us.  We use a hoodie during the summer.

4. Hat, scarf and gloves goes everywhere during the winter.

5. A blanket - This stays in the vehicle for use while out and about.  We use it at the doctor's office often where it is usually cold.

6.  Hot Hands - This is a brand of hand warmers that when exposed to air gets really hot and lasts for ten hours.

7.  Extra meds - keep labeled bottles in your purse or vehicle for those emergency needs.

8. Umbrella - Seems obvious, but easy to forget.

9. A change of clothes if there is any chance of getting wet.

If you allow your child the opportunity to swim, one parent on the FB group Parents of Children with Cold Urticaria recommended heating blankets in the drier and putting them in an insulated tote.  The towels stay warm for a long time.

To Medicate or Not to Medicate

I grew up in a military family that traveled the world over.  We did not stay in any one location for long.  We saw our grandparents, aunts, uncles and cousins once every few years.  We really didn't know anyone all that well or know them for long.  No one in the immediately family had to take a maintenance medication.  When we did get sick, the military prescribed ibuprofen and antibiotics for everything.

When my daughter first started having hives prior to a diagnosis, she was put on five different medications all at once.  She had to take every medication every day to prevent the hives.  We quickly took her back to the doctor each time one proved to not work or made her feel worse.  We went back so many times that the doctor finally told us there was nothing else he could do for her.  She either lived with the side effects or lived with the hives.

After six months we found an over-the-counter antihistamine that made a significant difference in preventing reactions.  Unfortunately it was not enough, but by this time we knew what she was allergic to, Cold.  Within a couple months later, a second off-label medication was added.  The two meds together changed our lives.  My daughter was able to leave the house more frequently and for longer periods prior to breaking out.  As parents, our world no longer revolved around crisis management strategies.

For the first three years I was bound and determined that the doctors would test for every cause to Cold Urticaria and confirm or rule out whether or not we could find her trigger.  There were times that we thought the meds were working to cure her and would attempt to take her off of them.  Like a headache, the meds were supposed to be a cure. Sadly, she continued to react. We found that during the summers she was more tolerant of cold that she was in the winter.

We did not want her on this medication all the time.  I did not want to imagine the damage that these drugs could do long term.  My daughter was on a medication as a baby for a long period for stomach issues.  After a couple years, the drug was removed from the market as it was killing babies that used it long term.  I no longer trusted drugs, other than Tylenol and Advil.  The doctors were frustrated with us trying to wean her off hoping she was cured.  We were frustrated with them for not doing more to prevent her symptoms.

She never could be removed from her meds.  Not only did she have severe physical reactions, but psychological reactions as well.  She has been on them for seven years now.  They have truly made a difference in her ability to function and be functional in her environment.  She still has breakthrough reactions, but nowhere as severe as she did without the meds. 

Prior to the controlling meds, she had three anaphylactic reactions.  She has had none since.  The meds do not mask her reactions, but actually prevents them.  It delays the reaction time and allows us the opportunity to prevent more severe reactions.  They allow us the time to get her to a safer environment.

Should you medicate your child?  It is a hard decision, but a necessary one.  I hope my experience will help you in making that decision.

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.







__________________________________________________________________________________

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.

_________________________________________________________________________________

 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.

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

An Invisible Disorder: How someone suffers from Cold Urticaria.

A person with a migraine shows obvious signs of wencing and numbing of the face, and person with a broken bone may have a visible displacement or someone with a cold has a runny nose and altered voice. Their symptoms and suffering are visible. Even though Cold Urticaria has a visible manifestation, the suffering is quite invisible. You cannot feel someone else's pain, their level of burning or itching, the knots in their stomach, the stress of getting a doctor to understand they aren't crazy, convincing those in your circle you do want to be friends, but you really are sick. Cold Urticaria is not a bunch of bumps, itching, anaphylactic reactions and whining, it is so much more.

Everyone with Cold Urticaria experiences similar, but varied symptoms and levels of symptoms. So I can only report from my daughter's perspective.

CU causes the obvious,urticarial wheals and welts (hives/rash), pruritis (itching) and burning. But it also has many other manifestations.

They can also have internal reactions.

Abdominal discomfort – nausea, vomiting and diarrhea are all reactions within the digestive tract to foods and drinks which are cold. As a baby, my daughter could should spit up clear across the room. As she progressed from the bottle to food, she had sporadic vomiting, always around meal time, but we never knew when it would happen.

Respiratory Distress – shortness of breath, difficulty moving air in and or out of the lungs, feeling as though you are being smothered from the inside, having asthma/RSV symptoms, feeling light headed, dizzy. The throat and lungs, react to cold air, cold drinks and frozen delights. Our daughter became anaphylactic three times before we discovered what was wrong. One time involved the consumption of ice cream.

Headaches / Thinking Difficulty – Headaches can occur with and following a reaction. Our daughter had headaches everyday, her thinking was confused and her personality altered prior to being treated for this condition. During times without medication or during the change of medications, our daughter's personality was altered. She became a five year old child once again, exhibiting not tantrums as you would expect, excitability, extreme joy and sudden sadness. She knew these changes were occurring, but she could not control or stop them.

Tiredness and Sleeplessness – A reaction leads to lethargy, tiredness, excessive sleeping, but in most cases, sleep without relief. TLC's night-time sleep disturbances were frequent and dreams were disturbing.  Increased anxiety was a result.

Threshold Variances – My daughter's threshold of tolerance changes by at least ten degrees between colder months and warmer months. She breaks out all year round and has to be medicated daily. However, the breakthrough breakouts rarely occur and she is not nearly as sensitive to the cold in the summer as she is in the winter.

Coexisting Urticarias – People with a physical urticaria have an increased chance of developing a coexisting urticaria. In my daughter's case, she has heat urticaria. Not only is she allergic to the cold, but to heat as well. Even though the best way to stop a reaction is to warm the skin up, keep in mind that the person does not have to be cold to have a reaction. We have to be very careful in warming her body up. Because of another condition, she does not sweat. For this reason she can easily over heat and have a reaction from being too hot.

Isolation - Chronic sufferers which are not able to prevent breakouts find themselves isolated from their neighbors, community and world.  for some temperatures as high as 70 degrees may be too cold.  For others it may be temperatures below 20 degrees.  It all depends on their threshold of tolerance and reactivity.  Depending on where they live, going outside may trigger a reaction.Going near the produce, freezer cases or dairy isle in the grocery store will cause a reaction.  Going to an air conditioned theater, bowling alley, mall, unheated pool, unheated or overly air conditioned church all can cause life threatening reactions.  Children commonly miss a lot of school during the winter months up north and during the whole year down south.  Down south the outdoors is cold in the winter and the indoors is cold during the summer.  Many children have to be homeschooled to keep from being over medicated and reacting on a daily basis.  Churches are often too cold and children and youth leaders don't want to take the necessary precautions of working with special needs children.  Adults and children alike find themselves prisoners to their own homes.  They have few friends and most of them are mostly acquaintances that they only see when they muster up of  wellness to get out once every so often.

People with Chronic Conditions may look healthy, but remember that their suffering isn't always visible. Remember, you can't measure how bad they are based on how they act or look. Trust them, be patient with them and work with them.