writer seeking help.

[caro]

I am a novel writer ( unpublished so far ) starting a novel in which one of the characters has CF.
The book is not going be predominantly about CF but it has an important part in the story concerning the bonding between a mother and a CF suffering teenage daughter. The reason I am seeking help on this forum is that I want to accurately portray positive aspects of living with CF, as I hope that any reader who has no knowledge of the condition will learn a little, and perhaps benefit from the knowledge.
I have found lots of information about the condition on various web sites, but it is the emotional issues that both sufferers and their families go through that are of more interest to me.
I don't want to bombard poeople with questions, but if anyone thinks they could help, I'd be very grateful
Caro

 

[SeasonsOfLove]

Caro, One book I highly recommend you read is Give Me One Wish by Jacquie Gordon. Good luck,

 

[JazzysMom]

One thing that sticks in my mind is that most CFers dont "look" sick. There have been many times when I was told how "lucky" I am to be so slim (too bad its for the wrong reasons), I also dont think people regard any "breathing" related illness as a real illness. My neighbor had a cousin who died of COPD & until her cousin went through much of we deal with (aerosols, meds, treatments), she didnt think much of it either. Unless one experiences the inability to breath, you dont know what its like. Words cant really describe it for me. To know that you have a serious illness that "flares up" & others dont know or understand is hard. My elderly neighbor kept telling me that I was too young to be so sick. I couldnt get make her understand how the CF thing works. I truly feel that the physical aspect is much easier to deal with then the emotional/mental part. I am not sure what you are really looking for, but I am an open book. If you wish to email me at rksmith98@verizon.net I'll try to help further.
Regards,
Melissa

 

[caro]

Thanks for the responses. I look forward to reading the book suggested, will try to get hold of a copy.

Your comments about CFers being thin, but otherwise often healthy looking was an interesting point, just the sort of detail that I need. Especially how other people react to that, so if any one else has any further comments it would be great to hear them.
Caro

 

[anonymous]

It may be benificial to interview both a mother and a daughter from this site, I woud love to help you but I am a wife to a CFer, so I can't really answer the mother/daughter questions. But if you have some other general questions you want answered, I'd be happy to give some input.


Julie (wife to Mark 24 w/CF)

 

[JazzysMom]

I had a time when I was at work that my hemoptysis (bleeding of the lung) started. It is "common" in CF patients. Is it "normal", no....."common", yes. Did you understand the difference in that statement? Anyway a co-worker in another department who knew very little about CF had me so frazzled because I thought I was going to die right then & there since coughing up blood was not "normal" according to her. After I calmed down from her words, I realized how little everyone knows about me. I could see how an "apparent" healthy, young girl who is working shouldnt start coughing up blood. Yet in my world.....it wasnt new or uncommon. It just meant something was up & had to be checked out.

 

[anonymous]

I am a mother of a 9yr old with CF.

It is very difficult when you have a child with a terminal illness. You are so devasted by the diagnosis. Even though you settle into a regular routine of Physio and meds every now and then it hits you like a ton of bricks that your child has a terminal illness. You would trade the world to make it go away. You have to be positive so your child does not focus on the fact that they are different so you bottle up all of your fears of the future. Knowing your time is limited with them silly everyday things that healthy people take for granted are special. Most of the time we do not focus on the future but today...now...and we try to LIVE every moment as best we can. But sometimes the reality of it weighs heavy...The love a mother has for her child is the strongest force on the planet. So when your child has this illness you want to protect them from the outside world that has no sympathy/understanding of this complicated disease. When people stare at your child for coughing or when peopple comment on how skinny they are. The WORST is when you first tell someone and they say HOW AWFUL!! or that is so TERRIBLE!!! and you are thinking deep down ...gee thanks for the moral support!! But what really matters is that despite all the negatives that come with this disease it opens your eyes wide as a parent to what REALLY matters in life. What really matters to me is that we love him just the way he is ... that different is OK and that god chose him because he was so special and he knew that he could handle this challenge and so could we.

 

[NoDayButToday]

My mom (SeasonsOfLove) and I would be glad to answer any questions you have about teenage girl/mom CFer relationships, if you are interested <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

You could also talk to my mother and me. We're both on this site, and we get along well. I'll make sure to email this link to her so that she knows it's here. Maybe you could ask something a little more specific? I'm sure I can help you in some way, but if I just start talking about the bond I have with my mother, I'll end up writing for pages upon pages. Let me know if you have any specific questions, or angle you want to look at, and I will try my best to help you out in that direction. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[caro]

Thanks again for your responses, just reading some of the topics has given me so much to think about. I am so impressed with the positive attitude so many of you have which makes me even more keen to get it right in my story. I will come up with more specific questions later, and will be happy to hear from any of you, if you think there is something that I should know about how you felt about CF from the point of view of a teenager, mother, brother or father.
If you don't want to post your thoughts on the forum you can email me direct at greenhamhall@btopenworld.com.
I am grateful to Rob who suggested I join this forum.
Caro.

 

[Purplelungs]

YOu can also interview my mother and me. Although it would have to be through email with my mom because she isnt on here. I am sure she would love to answer any questions you have. Like Emily and her mom, we have a great relationship too. you can email me at akberrie@hotmail.com

 

[Purplelungs]

I for got to mention this to. Someone said to get in a pool neck deep and breath through a straw, plug up your nose. And then you might understand what its like to have limited breathing ability. I forgot who said this and have no idea how it works, but i do know of a parent who tried to breath through a straw with her nose pluged up and do her normal household daily work. She said she couldnt last an hour, she became so tired and exhausted (sp?). Worth a shot if you want to get the breathing feeling, or part of it. If your asking why the pool, it puts pressure on your chest, makes it feel tighter than normal, some cfers feel like their chest is tight all the time and it becomes normal or when we are sick it can sometimes feel like a rubber band around the chest (some of us not all). Breathing through the straw represents small airways and clogged up airways. Plugging the nose prevents cheating and breathign through the nose, and some cfers cant breath through their nose anyway.

OK it might not be a good expeiriment.I have heard of several writers and even actors trying anything and everything to get as close to the real details as possible. I dont know if you want that too or not so I thought I would mention it.

 

[caro]

Thanks for that description, just the sort of thing I need to know, please keep them coming.
Caro

 

[lovingBenandCambree]

I am 25 with CF and I remember growing up my mother tried to be very over protective. I was very active and my mother would always try to hold me back from things such as cheerleading and dance and such. I often did things just to prove everyone wrong that I was capable and I believe that it helped my overall health at that time. It wasnt until I was 16 that I actually needed to be hospitalized.. That was a pivotal time in both mine and my mothers lives. We really didn't know what to expect. For me it was and still is hard to share your thoughts and fears because you don't want to excacerbate the fears that they are having on their own. I always tried to put on the happy face to help others get through it.

 

[anonymous]

I find myself keeping things light-hearted for my friends and family alot, so they don't get so upset. It's not like I think about all the scary and hard stuff all the time, but sometimes, I do have to just break down and feel the emotions. I do it by myself, and it works for me.

Sometimes when I do get real about what I'm afraid of, people like my mom will rush in and say "Oh, don't say that." I think it's important to confront our fears, and allow others to do the same.

Debbie
24 w/ CF

 

[letsrockcfem]

Debbie I do the same thing..I'm a 23 pwcf and am always the joker and am making people laugh. I feel that I do the emotional and breakdown stuff by myself too because I don't want people to worry about me.... I never feel sorry for myself and I don't think any of my friends or family do either. I'm just like everyone else except I've got a daily med routine, have to eat a ton more and have to go to the hospital a lot. I still have tons of friends, have the best family ever, play in a band, work and live a "normal" life. My family and friends are why I'm able to do these things because we never harp about having CF, we just deal with it and take each battle as it comes! Last night I watched the Bob Flanagan documentary with my best friend...well I left there kinda down and was hit pretty hard by it, the reality of it scared the crap out of me but it made me realize how important my fam and friends are...
my mom and I are always willing to help out with questions..

emily
23 pwcf
lets_rock_cf@yahoo.com

 

[caro]

Thanks again for all the response so far it has been a great help towards getting the characters in this novel right.

Now I have a couple of difficult question, you can answer on line or privately by email if you prefer at greenhamhall@btopenworld.com.

Do parents (carriers) and siblings without CF suffer from feelings of guilt? If so does it cause problems within the family?

Any help here would be appreciated.

Caro.

 

[JazzysMom]

Caro,
I would say without asking my Mom, but without a doubt, that she carries a huge amount of guilt. I cant tell her everything that the doctor says because she gets emotional. During my last checkup we talked about depression/antidepressants & even touched on the subject of transplant. Just the fact that we touched on these subject would put my Mom in a spin. She definitely is the type that if she doesnt acknowledge it then maybe it will go away. It was that way all of my childhood. I wasnt forced to do my treatments because she wanted me to "enjoy" whatever time I had. I took my enzymes etc. I just didnt do aerosols or PT unless I was in the hospital. We started out doing it after my diagnoses at 7, but it didnt last long. After my Dad died it just got worse. I wasnt "encouraged" to do activities. As a matter of fact I was "discouraged". Although it seems she was like that in general with all my siblings so it wasnt just about CF. I cant say it caused problems within my family as a child, but now that I have a daughter & husband it has become an issue. My husband (My Hero) has a completely different outlook on things then my Mom. He, however, has the ability to turn his emotions off when needing to make a decision. Mom feels that he truly doesnt understand since he doesnt have the "time" invested that she has. The time he has invested has actually been a lot harder than what she dealt with. One because it has been more often & two because its a different type of difficulty since the relationships are different. My Mom lives in the past. She is stuck on what she was told to her 30 years ago & really doesnt seem to want to know anything else. Whenever they make strides in CF (meds or other), she doesnt get excited like others do in my family. I think the basis of her whole attitude is that she wants me to always "need" her & until I met my husband, I did. I didnt know how to be my own person regarding anything in life....CF, Politics, Family Issues, anything. Now in some morbid way she is trying to punish me for being my own person & not letting CF hold me back. Is it just my Mom?

 

[anonymous]

My 12 year old sister has CF and I do not (I am 17). I used to be jealous of her because she gets alot more attention than I do and she is very close to my mother - they are like one person. As my sister has gotten older things have become harder on her body but she never gives up. My little sister is now my hero and I want to make the best of my life because she may not have that chance. I was recently confronted with someone offering me drugs - my little sister came to mind and I told them no because my sisters life will be shortened (not by her choice) and I have the choice not to shorten my life. Do I feel guilty? No - I have had the chance to grow up with the best role model in the world - my sister.

 

[JazzysMom]

My sister (the next youngest to me yet she is 11 years older than I am) told me once how she looked up to me. I was shocked. She was proud of the strength & courage I displayed over the years. I never thought anything of it because I was just doing what I had to do. It was nice to hear that!