“Playing the Cards Life has Dealt”
“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.
Yes there are limitations on a person’s life with CF and through time you will get to know what they are. Do not use CF or any other health issue as an excuse to not do things because you will look back and regret it. It is better to fail trying than failing to try. Be conscious of your surroundings. If there are sick people around do not go near or wear one of those fashionable masks.
While I was a teenager I was put on an anti-depressant for depression and it did help. I began to feel better and slowly got off of the anti-depressant. You are not a bad person if you need the help of an anti-depressant. Dealing with an incurable disease tends to make one depressed. It is better to do something about it than to let it get the best of you.
After my divorce my depression got very bad. I just wanted to go to sleep and wake up when it was all over with. I did not want to deal with it all on top of my health issues. If I did not get some help I knew that my health would go downhill fast so I made an appointment with a therapist. I got started on an anti-depressant and it did not work for me then we tried another one and it began to help. I did not want to be without feelings, I just wanted to be able to deal with everything and keep on keeping on. If you have one episode of depression in your life there is a good chance you may continue to have more so you really need to get help and get it under control early. I was a little ashamed that I was not able to deal with everything on my own but soon realized that it is OK to have help. You do have a purpose in life even when you feel like you are insignificant or that no one would miss you if you were gone.
I came to realize that God is my strength and I am here for a purpose. I may not know what the purpose is but I am going to keep going until I fulfill that purpose. I am not angry with God or my parents for me having CF. It is no one’s fault that I have CF and it is not even my own fault. I like to think of CF as the challenge I have been given in my life and I will conquer it. Some peoples challenge is to manage millions of dollars but mine is to help millions of people, which an extra million dollars would not hurt to help those millions!
How do I deal with hospitalizations? Well first of all I know that I have to do it in order to get better. Now the food at the hospital is another thing! I quit counting how many times I have been inpatient a long time ago. When I was younger the hospital really sucked, but after a few times I knew it was going to be a part of my life and that I would have to deal with it. I could deal with it or I could hate it and be miserable. So I choose to deal with it. I quickly became close to the nurses and RT’s (respiratory therapists) that were taking care of me. They became my extended family. I still try to get out of the hospital as quick as I can because I want to get back to somewhat normal life. I try to be a good patient and stay as long as I need to be there and not complaining about the length of time I am there. Being in the hospital is no fun for anyone but when it is something you have to do quite often you have to make the best of it. Most RT’s ask a CF patient how they like their breathing treatments and airway clearance done because they know we do it every day of our life so it helps to have a good routine. The nurses also know that CF patients have their own way of doing things. A lot of times the nurses will ask how I do things at home and they try to do things as close to that way as possible. Like I said, it helps to be proactive in your healthcare so that you know what is going on and how you like things. There are some CFers that like for the nurses and RTs to do everything for them while inpatient. I, on the other hand, am the opposite. I like to do things myself because I know they will be done on time and right. Type A personality??? Maybe, just maybe.
After a “Club Med” stay usually comes home IV’s. When oral antibiotics are not enough they use I.V. antibiotics. I am usually on IV’s a minimum of three weeks. I started needing home IV’s at the age of thirteen. I did all of my own infusions and flushes from day one. Now I am an old pro at it. I took the initiative from the get go. I did not want to have my mom and dad have to worry about it since they had enough to already worry about. I also think that I knew that I would make sure it was done and done right. I am somewhat of a perfectionist. I have finally started letting people help me with my IV’s and it has been hard to let go of the reigns.
I have always done everything on my own because I did not want to need anyone or their help. It has not been the best thing to do because it wears me out doing it all when there are people willing and asking to help. So I finally broke down and let people in my world which was not an easy thing to do. I never want or wanted to be a burden to anyone nor did or do I want people to feel sorry for me. I did however want people to understand as best as they could what it is like to have CF by me living my life and educating them.
When I am in the hospital and I am done with an IV infusion sometimes it takes awhile for the nurse to come in and flush my line so if there is a saline flush in the room I will disconnect and flush myself. I know it is not playing by the rules but most nurses know that I do IV’s at home so I am use to doing it and am impatient. There are some nurses that get mad so I usually only flush myself off when I know my nurse. Most nurses laugh and then say “ok well here is your flush for the next antibiotic.” They do have other patients to take care of and I am self sufficient so it is not a big deal. Like I said before, I know that there are CFers that like the fact that they have someone to do it all for them, not me I am impatient and like to have it done, or some might say controlling but I am not claiming that just yet!
Once when I was on IV’s at home I got up to do my seven am dose. I fell back asleep in the recliner while my dose was infusing. The phone rang and I jumped up to get it but I passed out as soon as I stood up. I came to and saw my PICC line (a long term IV in the upper arm) lying on the floor. The medicine was still pumping away. When I stood up the IV tubing got caught in the arm when I closed the recliner and pulled my PICC line right out. I had been having a little trouble with this particular PICC line so they had to unstitch it and pull it out a little bit. Normally when the PICC line is placed they stitch it in place so that it does not move. A PICC line is over a foot long, it goes into through the arm and into a main valve in the heart. Needless to say you can see why I passed out. After I realized what was going on I went and told my mom who was sleeping. We called the doctor to see what he wanted me to do and then it was off to the ER to get another IV because I was not done with my antibiotics. When I got to the ER they laughed at me, they had never seen that before.
There are things that CF patients should not do like smoke. I do know some that do smoke and that is their choice. I avoid smoky places because it makes it very hard for me to breathe and it makes for a bad day. I am allergic to things like dust, mold and animal dander so if I go to someone’s house and they have any of the things I am allergic to I begin to wheeze and have a harder time breathing. I try to avoid the things I know cause me to have trouble breathing. Some things cannot be avoided like mold in the outside air and things that are in the water and dirt.
Now onto all of the coughing that happens with CF. I do not notice how much I cough because I always cough. I love the question, “Now when did this cough start?” I just laugh and say thirty plus years ago. Those that ask that question are the floor residents (I am seen at a teaching hospital) who have never seen me before and do not deal with people with CF that often. Sometimes they think it is funny and other times they look annoyed. The other question I love is, “when did you get CF or how long have you had CF?” The answer to that one is when the conception happened. I understand that they mean when was I diagnosed but some people do not know that CF is genetic and that you are born with it. I use humor to deal with all of the not so fun stuff of CF. When people ask me if there is anything that they can do for me I sometimes tell them to check the supermarket for a sale on lungs. Most people do not know whether or not to laugh. I give you permission to laugh. If you cannot have a sense of humor about the ups and downs of life with CF it can get tough.
I like when people ask questions about CF or about my scars on my chest where my port is for IV’s. When questions are asked it opens the door for me to teach about CF and share my journey in it.
When and what do you tell your friends? First of all, keep it real and be honest. Just because you have CF does not mean that you are going to die the next day. It is easier for your friends if you are yourself and do not try to hide CF. It is ok if people do not know what to say, all you need is a friend. Do not be afraid to let people in. Yes some people will let you down but not everyone.
What to do with advice of how to get better? Laugh! Laughter is the best medicine but watch out I may start coughing but that is ok because it helps get the junk out of my lungs. When I am at a store or in church and cough some people look at me like I have the avian bird flu or the plague or something. Do not worry you cannot catch CF. Some people offer me cough drops which by the way do nothing. Since I get weird looks or strangers tell me how they just got over what is going around I try my best not to cough. Trying not to cough does not work but I try my hardest. Everyone has their “remedy” of how to get better but doing what the doctor says usually works best. You should always check with your doctor before changing anything in your treatment of anything.
When I am feeling “crappy,” or the clinical terminology, “having a CF exacerbation” I like to watch chick flicks and comedy’s to get my mind off of things. I also hang out with family and friends who make me laugh. When I am in the car by myself I sure sing at the top of my lungs, however much of them that may be.
When I was in the hospital one of the times my dad and his wife came to visit me, he told me he forgot my card in the car. He said “I’ll just save it for the next time.” We cracked up laughing since we both knew that would not be the last time I was in the hospital. The next time I was in he brought it to me. I should have just given it back to him so that he could continue to keep giving me the same card over and over again.
Exercise is very important and it has only taken me over fifteen years to get that through my thick skull. I’m not saying I am diligent now by any means but It helps so it needs to be done. I really wish I would have started exercising regularly when I was first told I needed to. I wonder where I would be if I had done what I was told. I wonder where I would be now if I did it like I was supposed to.
I know when I die that I want people to remember me as a fighter. I am not and will not give up until my last breath. I like to have fun and enjoy life. My life may just be at a slower pace than yours but it is nice to take time to stop and smell the roses. Push through all of the junk and see the roses when there are only dandelions in your sight. Do not be afraid to live! Make the most of the time you are given.
There are well over 70,000 people with CF all around the world (more than 30,000 of them being Americans) so if you have CF you are not alone. I know it may be hard but find a place where you can be happy with life. Surround yourself with people who you love and love you. Life has more purpose when you can give a little love away. It is nice when people tell me that after visiting me in the hospital they leave encouraged. It helps me to know that I am contributing to the world in some way.
Just be honest with yourself and others. The life you have been given may not be the easiest but you are very lucky to be alive. The death issue is a sore subject to a lot of people. Many people do not want to talk about it. Everyone is going to die sooner or later so you should be able to talk about it since it happens to everyone. There will be something or someone that comes along where just for a minute you will forget that you have CF or any other disease. Smile, it could be worse! Yes I am serious, it could be worse. There is always someone who has “it” worse than you so be thankful for what you have and where you are in life.
When I get sick, have an exacerbation/pneumonia, it brings the not so fun thoughts to the forefront of my mind. It makes me realize that CF will never go away and it will only get worse. Yes I can prolong it and I try my best to do so. I make the most of what I’m given. I have freak out moments where I cry and think of all the not so fun side of things. I think, “can I do this for the rest of my life?” I will keep pushing no matter how hard it gets with many freak out moments I’m sure. What matters is that I keep on pushing.
When I get sick I think about my family and friends too. I don’t want to let people down. I’m sure you are thinking I am nuts but I am just being real. I don’t want to hurt my family and friends. Now you ask how I could hurt them with me being sick. Well it can hurt their hearts. I know I have no control over that and if people love me they are going to be sad or mad or whatever emotions they have when I am sick.
Most days I just wish I could be “normal.” I don’t know what “normal” really is but I do know that it doesn’t involve lots of coughing and lots of meds and treatments and all that jazz. I hear “normal” is overrated anyway so it may be better to be a special breed like me. I would love to be able to get out of bed and just go somewhere without having to do a breathing treatment and take lots of meds. Oh my that would be heaven on earth!