This journal is from my caringbridge site (www.caringbridge.org/visit/65rosescf) that I started to help keep everyone up to date about how I was doing. It helped because it was one place that everyone could go and even sign up to receive emails when I posted a new entry. I then wouldn’t have to repeat myself a million times. My first entry was on July 26th, 2006. I am very thankful for the caringbridge site; it has helped family and friends stay current on how I am, even family that I don’t get to see because they are states away.
As I post on my caringbridge page I always wonder if anyone is really reading it. Then I get emails or messages in the guest book from people whom I have never met but they are reading it because they found my page through someone else. Just to know that I am helping and encouraging someone by sharing my journey helps me keep going. Without further ado, here is my journey…..This is only a small snippet.
My family is great. I love them so much. I have had a hard time letting my family into the true side of things. I know they have their own range of emotions about me having CF and how it makes them feel. I know they are scared about it all in their own way. The bottom line is CF and all that goes along with it sucks. When I was younger I was more vocal about how it sucks just for the simple fact that I was a rebellious teenager. The older I got the more I have tried to “hide” the reality of it all from people. I would like to write to my family now:
I was the poster child for the Cystic Fibrosis Foundation for 1985. While poster child for the CFF (Cystic Fibrosis Foundation), I met Frank Deford (father of Alex Deford whom a movie was made about her life with CF), local celebrities and professional athletes. I was interviewed by the local paper a few times, attended CFF fundraisers and much more. There is a CF Fundraiser Ball every year and when I while poster child I was able to attend. There I met many famous people and got a lot of attention. It was a way to let people see what CF looks like in real life and not just the foundation that people were giving to. The poster child/children showed the faces of CF and educated and spread awareness about CF.
I get asked if I can have children quite often. I have many friends with CF that have biological children. Having children is something that needs to be discussed with your doctor so that they can determine what is best. Women with CF are able to have children but may have some difficulty getting pregnant due to the thick cervical mucus that the CF body produces. Some may also have fertility issues. Ninety-seven percent of men with CF are sterile.
If you want to conceive and one person has CF or is a carrier then genetic testing can be done on the person who does not have CF to see if they are a carrier. There is a one in four chance that your child will have CF if both people are carriers of the CF gene. Some people choose not to have genetic testing done and that is their choice. You should discuss getting pregnant with your CF doctor. Most likely once you voice an interest of getting pregnant to your CF doctor, they will suggest genetic counseling. Genetic counseling consists of the genetic counselor getting medical history information about yours and your spouse’s/significant other’s family. The medical history will help the genetic counselor to see risk for inherited diseases. If there is a risk then you will receive information about the diseases and the level of risk. A lot of times you do not have to do genetic counseling if you already know that you are a carrier of CF or other diseases. You can bypass the counseling and go straight to getting the genetic testing started. Once the results are in then you can make a better decision about getting pregnant. Pregnancy should be under a doctor’s supervision so that you get the best care possible. Pregnancy can be hard on a healthy woman’s body, so having CF and carrying a pregnancy can be very difficult.
“I do not want CF anymore!!!!” I think most everyone with CF or any disease will utter those words at some point in their life. Depression is no fun. As I get older and the fight becomes harder the depression has gotten worse. The frequency of exacerbations (CF infections) has increased over the years. The progression of my CF has been hard to deal with at times. Since CF is a progressive disease it is hard when you are doing pretty well and then out of nowhere CF rears its ugly head.
I went through a time when I was very depressed and had thoughts of ending it all. I had the mentality that I was going to die anyway so why prolong the inevitable. When I say “die anyway” I mean from CF or CF related things. Yes I know, everyone will die and we don’t know when that is but when you have an incurable disease you are pretty certain of your future. You may not know the time but you know what’s coming. During this time of major depression I was not doing what I needed to do to take care of myself like breathing treatments or taking enzymes. I was very good at hiding my real thoughts and feelings. I always had a smile on. I learned how to fool everyone when on the inside I was just waiting to die because I did not want to do it anymore. There are still days when it just gets overwhelming and I just do not want to do it anymore. Taking care of myself is draining. I get very tired of taking tons of pills and liquids, doing multiple breathing treatments, lots of airway clearance, “Club Med” stays, home I.V.’s, shortness of breath, coughing, wheezing, coughing stuff up including blood, being known on first name basis by the hospital and doctors, and just plain fighting.
Just when you think everything is good or things could not get worse something happens in your marriage. Unfaithfulness, money problems, addiction, growing apart or getting scared. When your spouse is unfaithful it hurts to the core. You feel like you did something wrong all these years for them to do that to you. Well that is what happened in my marriage, my husband of seven years was unfaithful.
I had to realize that I did nothing wrong and it was not my fault. The first thing that I thought is that I will never be able to find someone who is going to want me or like me because of my “baggage (CF).” The divorce was the hardest thing I have had to go through. God did give me strength to deal with it but I still could not help but to think my life was over as I knew it. I did not even want to think about dating because that is all I needed was another man who was going to treat me bad.
The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school. January of my senior year I had the opportunity to go to Hawaii through the Dream Factory. The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does. My wish was to go back to Hawaii. I have family that lives in Hawaii and it is my favorite place in the world. I haven’t been anywhere outside of the US but still it is my favorite place to go/be. The only weird thing was my fiancé went with me, not so much of a kid thing to do. In July of 1998 we got married in a big catholic ceremony. We moved to Pittsburg, KS two days after getting married. My husband was going to start college at Pittsburg State University and wanted to walk on the football team.
While I was living in Pittsburg I hung out with my aunt a lot since she lived there. She invited me to a women’s bible study. I was very interested because I had a lot of questions that I wanted answered. One of my questions was, did God give me this disease and why? I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven. I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that. I know there is a reason I have CF I just cannot see the magnitude of why yet. I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.
When school started it was fun for me but terrifying for my parents. I was the normal kid running, playing, and joking around. Every year my mom would have a conference with the teachers and the school nurse to inform them about CF and what to expect with me. I would also get up in front of my class and talk about CF and during that time then the kids were able to ask me questions. My hope was that they would ask all the silly questions then so that I would not be talked about later.
School was fun for me. I liked to learn and be around all the other kids. I was a social butterfly. I was unable to do some of the things that other children were able to do like going outside and playing if it was cold. I had to stay inside during recess if the temperature was below fifty-five degrees. I know my mom was doing this to protect me from getting sick but it was no fun to be the only kid sitting inside during recess. I did manage to go outside when the temperature was above fifty-five degrees but then I did not want to come inside.
I did have special academic testing at school due to the fact that I was absent a lot because of being sick. The testing was to make sure I was learning on the correct level and also so that I could have tutors when I was out of school for a long period of time. We also had to set up an IEP (Independent Education Plan) so that when I was sick and missed school I could still stay right in line with my class.
Denial is a common feeling when dealing with a genetic incurable disease. The first people to deal with the denial and guilt are the parents when they get the news that their child has Cystic Fibrosis, a progressive incurable disease. Most all parents leave the doctor’s office after receiving the diagnosis in a fog of “this can’t be real.”
Now a days most all parents/family members go to “Dr. Google” to find out what the World Wide Web has to say about CF and what it entails. By “Dr. Google” I mean they go to google.com and enter Cystic Fibrosis and start reading everything that their little brain can retain, all the good and bad. The bad being what sticks with them. As time goes on the parents should educate themselves from reputable sites like www.cff.org. Also speaking with other parents of CFers and people with CF will help them know they are not alone and they can do this. Your CF clinic should be able to help you get in contact with others.
Some family members never get over the denial and/or guilt that their child/sibling/grandchild/niece/nephew/cousin/etc. has CF or whatever disease they are dealing with. Thus the reason that CFers can feel like they are a burden on those in their life.
My day begins by doing a breathing treatment along with airway clearance. I used the ThAIRapy Vest up until July of 2010. I received the Respritech-Smart Incourage Vest in July of 2010. They are both a device and system for clearing excess mucus from lung airways (bronchi and bronchioles). It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs. These oscillations thin thixotropic airway mucus, facilitating its removal by coughing.
I use a nebulizer to inhale my aerosolized medications. I do breathing treatments four times a day. I like to call it “smoking my pipe” and doing the “shake shake.” Breathing treatments take anywhere from fifteen to thirty minutes, possibly longer depending on what medicines I am inhaling.
Postural drainage and chest percussion (PD & P) also called postural drainage and clapping (PD & C) is another airway clearance technique. We like to call clapping, “beating,” no not in a bad way but that is basically what is happening when doing PD & C. There a few other ways to do airway clearance such as; the Flutter Valve, Accapella, Incentive Spirometer, percussor (“vibrator”), Intrapulmonary Percussive Ventilation (IPV), The Frequencer, breathing and coughing exercises. The goal of airway clearance is to loosen up the secretions in the lungs and make them easier to cough out.