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.

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.

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.

Introduction

It seems that everyone has a blog these days.  I hate being just one more, but I have a story and I want to share.  Not only will it give me an outlet, but a voice.  Hopefully it will give you knowledge, understanding and compassion in the area rare of diseases and a family's journey.

Our daughter, now a teenager, has been diagnosed with three rare disorders; Cold Induced Urticaria, Dysautonomia and Ehlers Danlos Syndrome.  Among these disorders are many regular diagnoses such as migraines, neuropathy, hives, hypoglycemia, and many others.

I will share the milestones of our journey, the stumbles, the successes, the acceptance.  I will also share information about the conditions themselves.  I hope to bring awareness for others like her, acceptance and awareness among peers and physicians.

This is our journey as we are in rare company, looking beyond the mirror.