Fall 1999 ~ Newsletter
Cystic Fibrosis and Depression
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Patient and Parent Perspectives
What Do You Mean I Might Benefit From Counseling?by Shannon Jones*
My name is Shannon Jones and most of you know me very well, especially if you have been in the hospital recently. I am 28 years old and, of course, I have CF. I have been coming to Children's since I was five years old, and I now come in the hospital about every 6-8 weeks. I used to only come in 2-3 times a year but things have changed for me the past four years. I have recently got divorced, something not planned of course, but at the same time, a very good decision on my part. I have been through so it's not easy having problems and CF seems to only complicate things. I have always considered myself a strong, independent person, capable of dealing with anything life throws my way.
However, in March of last year (1998), things changed. My life was a total mess. I hated everything in my life; I hated myself, my husband, my job and anything else associated with my life. I guess my depression started in November or December of 1997, and I didn't realize I had a problem until March of 1998. I would cry every night before I went to bed and wished to God that He would let me just die so I wouldn't have to deal with anything anymore. My marriage was in serious trouble. We were in debt financially. I tried everything I knew to do to try to "fix" my marriage, but nothing worked. I got to a point where I felt like a total failure because I couldn't solve my problems anymore. I knew that I couldn't go on this way anymore or I'd go crazy. I thank God He didn't let me die, but gave me enough sense to know that I needed professional help. I was raised in a Christian home and go to church and felt that "church" could solve my problems, but in my case it didn't, I needed medical help.
Some people think that depression is a social or emotional type problem, in a way it is, but more than that, it is a medical problem. Depression is caused by a chemical imbalance in the brain, and having a lot of stress or problems can create an imbalance, which can lead to depression.I finally realized one day in the hospital that I needed to talk to someone about my problems, so I went to Staci Thrasher, (a social worker) and talked to her for more than two hours. I felt some relief in talking with her, but I knew that was only the first step in getting me back to feeling better about my life and myself. I then talked to Dr. Clancy and he suggested I see a psychiatrist. I was hesitant at first because I felt that people would think I was crazy if I saw a "shrink" or that seeing a psychiatrist would only mess up my mind. Dr. Clancy reassured me that seeing a psychiatrist would not make me a "weak" person or "crazy." He said all they evaluate you based on the way you're feeling and the problems you have and decide if you need medication and need counseling on a regular basis.I needed medication and a counselor on a regular basis. I was scared to go at first but after my first meeting and was very glad I went. My counselor has been a life saver to me, and I thank God that He sent her into my life. It is nice to have someone that is unbiased to listen to my problems and to help me find solutions to them. She doesn't tell me what to do with my life but offers me advice and helps me see what kind of choices I need to make in my life. I wouldn't be here today if I had not made that first step in seeking help from Staci.
CF is not only a physical problem but it can also be an emotional problem as well. No one knows what we go through until they have walked in our shoes by having this disease. CF is a daily battle for all of us, but we shouldn't let it defeat us with the problems it can create and bring to our lives. I hope I never get as depressed as I was a year ago.I feel so much better now since I have been going to counseling and enjoy life again. I continue to see my counselor weekly and take my medication daily. I don't think I would have been able to deal with my divorce if I had not seen a counselor. I would advise anyone that is having any kind of problems, no matter how big or small, to seek the advice of a professional. It doesn't mean you are a weak person to ask for help, it just mean you are a smart person to take the initiative to take care of yourself before things get out of hand.I wouldn't want anyone I know to have to go through what I did when I was severely depressed. When I look back on that point in my life and compare it to now, I feel like I was a totally different person then and can hardly believe that that was my outlook.
*Editors Note: Shannon Jones passed away on August 6, 1999. A special thanks to her family for granting the permission to print her story.
How Our Family Copes with CFby Donna HovaterWhen I was asked to write about how my family deals with the trials that come with a diagnosis of cystic fibrosis, I thought about a poster I recently read. It said, "POSITIVE ATTITUDES ONLY ALLOWED PAST THIS POINT". A positive attitude has primarily helped us cope with CF in the past 14 years since our son, Cade, was diagnosed. Physicians will tell you that patients with positive attitudes do better than patients with negative approaches, whether they're fighting CF, cancer or some other life-threatening disease. For us, being positive has meant that above all, we believe God can and will cure this disease. Because we believe CF will be cured, it's our job to follow the doctor's advise for a treatment plan of CPT, medications, proper nutrition and exercise to keep Cade's lungs as undamaged as possible while we wait for the cure. Feeling that Cade can beat his illness has given us the strength to get through some pretty scary times.Following the advice Dr. Ralph Tiller gave my husband and me the day Cade tested positive for CF has helped him have as happy and normal childhood as possible. Looking like a stern grandfather, he told us to "take this baby home and treat him normally." We've done that by letting him play baseball, football, basketball and whatever sport he wants to attempt. If he finds that he's too small for one, such as football, he moves his attention to another. To my horror, he discovered dirt bikes as a replacement to football! His ego is boosted and he gets plenty of exercise while Mom adds to her collection of gray hair.Missing a lot of school days has become a problem this past year. His teachers were understanding and allowed Cade extra time to make up the work he missed while in the hospital. Filling out a Form 504 can prevent some of the problems that arise from missed school attendance, medications at school and the challenges from PE. Form 504 keeps our children from being penalized due to disabilities caused by cystic fibrosis. I've found the schools are more than willing to work with students to everyone's satisfaction.
CF is a very expensive disease and the financial stress it causes can become overwhelming. Help can come from the social workers at your hospital. They are a caring source of information on programs such as All Kids, Children's Rehab Services, Medicaid and SSI. The business office at your hospital can work with you on a payment plan that is easier on your budget.A friend once told me she would be so terrified by the feeding tubes, IVs, ports and mountains of medication Cade required that she'd probably keep her son confined to his bedroom if he had CF. I'm sure she was exaggerating, but every device, medication and "bug" has its own special challenge. Sure, we're all apprehensive at first when a new treatment places us on unfamiliar ground but soon they become a part of our usual routine. Read and ask questions about any equipment or treatment that you feel uncomfortable using.Last of all, we're all in this boat together, rowing towards a common goal in beating CF. There are many times when we've just needed someone to talk to about CF. Sharing our thoughts and fears with a CF support group, social worker, minister, medical staff, another family member or person with CF has often lifted our spirits and made it easier to cope with Cade's cystic fibrosis.
Through the Eyes of Having CFby Tara Owens
One problem I have with society is how quick labels are learned to define people. I have Cystic Fibrosis. When people learn this about me they take one of two approaches.1. I am automatically incompetent to do anything stressful no matter how long the person has known me and I've been doing "normal" stuff for years.2. The other would be looking at me in a different light. In this light I am now respected as a "super girl" for doing normal things everyone else does. Generally, if they take the first approach, they eventually take the second.I understand what could be going on in others' minds. Well, maybe I don't. I have never had the luxury of waking up in the morning feeling good. I do not know what it is like to run across the yard without coughing, imagining how it feels to be caught up in school and not making up tests all the time. Regardless, this is my life. The only one that I have ever known. It is hard to see the good that has come from this, but it is there. Sure, everyone sees you as different, maybe. I see myself as lucky. Maybe my body hasn't quite cooperated how I'd like over the years, but my mind and my spirit have learned to soar far above the "normal". Cystic Fibrosis has made me see things no one else dares or imagines.
We lose a good friend at least once a year. Healthy people lose an average of five or six close friends or family within a lifetime. Have they had the pleasure of loving people for who they are and every moment they can because they know that life is so short? Possibly, but not in comparison.I've learned to treasure life, the people I've been fortunate enough to have in my life and to be patient with my body. I never know when my time will be up. Dealing with CF, I've learned not only to be ready, but to not fear death. That is a gift many people do no have a chance to receive. With the help of my family, friends and my special friends also battling CF, and the doctors that care for me, I see how very lucky I am. I would not trade or change my life for anything. When people first realize I have cystic fibrosis, they think my disease makes me different. When they get to know me, they realize that my spirit is what differentiates me from anybody else. I now realize how special it really is to be different!
We Have a Choice!by Kerry LambertLife is challenging enough on it's own without having to deal with life threatening illnesses! Chances are that if you're reading this, you have experienced significant difficulties in your life. We all have. Personally, I went through a bone marrow transplant two years ago after being diagnosed with leukemia, and I also have a fourteen year old step-daughter that is living with Cystic Fibrosis.The diagnosis of a life - threatening illness, and the roller coaster ride associated with illness constitutes just one of many traumatic circumstances in life. Most of us have dealt with situational depression cause by traumatic events. During these times, it is necessary to acknowledge and work through the feelings of shock, disbelief, anger, etc. that accompany traumatic times. It is important to address these emotional issues. And the key is to work through emotions and not to "get stuck" in any one place.
At some point, we must decide to move on. We are able to move on by making deliberate choices. Each day when we wake, we can choose to focus on the positive things in our life. Or we can choose to allow the negative things drag us down. Often we are able to "get through" the issues on our own. Sometimes issues are so difficult that we need to call on others for assistance. We may choose friends, clergy, or other professionals.During times of situational depression, it is also important that we take the time to care for ourselves. When our bodies get worn down, it is more difficult to get back up on our feet. We must be sure to eat right, get plenty of rest, along with exercise.
Faith has been most valuable to me in dealing with life's daily struggles. The Bible tells us in Philippians 4:13, Be anxious for nothing, but in everything, by prayer and supplication with thanksgiving, let your requests be made known unto God. And the peace of God, which passeth all understanding , shall keep your hearts and minds through Christ Jesus.--People often ask how our family copes with everything that we have been through. The grace of God has allowed us to face each day and make the best of it. We accept that the wisdom of God far surpasses our limited human understanding. When we are faced with difficult circumstances, the first thing that we pray is for God to give us wisdom to learn something valuable through the trial. Then we pray for strength and deliverance.We grab onto and live each day focused on these two verses from the Bible:"I can do all things through Christ who gives me strength."Philippians 4:13"The joy of the Lord is my strength."Nehemiah 8:10Through our faith, our family has developed a greater appreciation for the good days, and believe it or not, we have developed a greater appreciation for the bad days. We appreciate every day that we have one another! We remember that each day we are give a choice. Most days we choose to focus on the positive.