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.