Sometimes, it is the little things that make the difference. Here are some tips that really helped us.
In one sense, it was actually a relief to learn Roberta Jean has cystic fibrosis. She needlessly endured years of respiratory distress, slow growth and horrible stomachaches due to misdiagnosis. Hearing that painful diagnosis meant we could finally, effectively address her symptoms.
As she began using medications and treatments, she immediately improved. She really perked up and her complexion was no longer pallid and sickly. The stomachaches subsided. There was hope that she could thrive and enjoy life like other children. This really helped ease the blow of her diagnosis.
Learning that a loved one has a chronic illness like cystic fibrosis is a challenge to say the least. Here are some coping strategies we developed along the way.
Friends or family members call to check in with her each day. This keeps her accountable in a fun way as she chats over the phone. It also reassures them about her health even though they are not nearby.
Roberta Jean has to periodically stay in the hospital. That is just how it is for CF patients. She has a good network of friends and family. So, she has plenty of joyous visitors and people to talk to on the phone. She also passes the time by using the Internet and watching DVDs.
It is a big relief to know she is not stuck in the hospital, miserable and alone. Between everyone, we can care for her pets and generate a steady supply of visitors without exhausting any one person.
She is very active in the Great Strides fundraiser each May. We are already brainstorming ways to raise more money for next year. It brings her such pride and joy to help such an important organization.
The More You Know
Learning about cystic fibrosis is helpful, too. It seems like there is a lot of outdated info floating around. At the time of her diagnosis, we were told CF patients usually live to age 10. The Cystic Fibrosis Foundation currently has that average just above 37 years. I consider that great strides, indeed.
Researching and reading about the latest treatments and discoveries reassures me that a cure will come any day now. In the meantime, they keep finding better methods of treatment and diagnosis.
It is important to integrate cystic fibrosis management into your normal daily life. Dealing with CF is not a chore or a headache, merely a fact of life.