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.