How CF affects a family...

[HollyCatheryn]

What is comforting? To me, being given a chance. I don't like it when people say, "oh, well then I won't ask you to do this..." or "this is beyond your reasonable reach..." I want people to just say what they want, what needs to be done or just accept what I want to try. If I fall flat on my face, then fine. If I can't do it, then I'll admit it, but I don't want to be counted out before being given a fair shot. I don't like people offering lots of solutions for me. Most of the time I'm pretty creative and can come up with a workable plan for myself. Occassionally I get stuck and can't see options and then I like suggestions or hearing what other people have done, but I don't want something handed to me on a platter. On a more tangible note, massage. If I've worked really hard during the day, or just done my vest, am a little under the weather or have been coughing a lot, a nice gentle rub is very soothing. I've talked about this with others that when your body is enduring unpleasant sensations - even if they are a normal part of your life - it is that much more important to get lots of pleasant, positive touch. I am blessed to have married a man who could (and does) rub my shoulders, back or whatever for hours. Another thing that is comforting is being able to just talk things out without having to sit and explain for hours beforehand. It is nice to be understood. It's nice to be able to say to my hubby, "I don't want to do treatments any more - it sucks!" and to know that he's not going to call the psychiatrist or social worker on me. He knows that I'll still do what needs doing, but he agress - it does suck. What gets me out of bed every morning? Well, to be quite honest, there have been some times where I honestly don't know. I think it was just God waking me up, dragging me forward into the day. Right now, a bouncy trouncy pouncy flouncy almost 3 year old who loves life and wants to share every moment of it with me. I love her, but sometimes I wish she'd sleep in. I also get up because I have a shot at making today what I want it to be. I get to make all sorts of choices about how I want to live THIS DAY. I can make it as good as I want or at least as good as I can. I cannot abide the thought of facing God in heaven and telling Him that I just "didn't feel like it." Oh, sure I take some days easier than others - because of a need or a long range goal (like getting over an infection or taking care of myself so as not to get the infection) - but saying that about my LIFE. No. I've survived several close calls and I know what I've got. I don't want to waste this shot at doing life. I also know that even though I have little or no control over my health sometimes, I have almost complete control over my attitude and frame of mind. I can be as content and joyful and passionate as I choose to be. I don't want anyone to be able to forget me. If I kicked it tonight, I'd want to be remembered. So, I get up and push hard - nearly every day. Bodily functions? Well, some of us have trouble slightly (or not so slightly) wetting ourselves during a coughing fit. I tend to think that my problem has also to do with having given birth. I've said it before, but I probably COULD control my passing gas more, but I don't because I can blame it on my daughter. Well, I used to, but she's very verbal now and starting to say, "It wasn't my butt!"

 

[NoDayButToday]

Numbers being down refers to PFTs (as Emily said) most often, but can also refer to SATs (oxygen saturation levels). I've never had trouble with being unable to control bodily functions- I burp and fart more than most, but it isn't a problem in my life really (when I was younger, it used to be with teasing and all). But what can be a problem is during major coughing fits, if you have one with a full bladder, you can get some 'leakage'. It's in no way enough to merit a diaper or changing underwear or anything like that, its just annoying.

I'm too tired now to answer your more emotionally involved questions (comforting things and getting up each day)... but I'll be back! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Julo]

Wow! I went out with my friends on Friday and Saturday night and came back to check if I had any new responses and I already have so many!!! Thank you all <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey, I think it was you that asked what class this is for... it's a Research Writing class that until now i absolutely hated! I knew when i signed up for the class that I would have to write two papers, and I knew right off the bat that I wanted to do it on CF. However, the professor picked our first topic which was the Tsunami. I realize that the Tsunami is a big issue, but deffinately not the topic i wanted to write five pages about. So, I got off to a bad start and until now I dreaded the class. Fortunately I got to choose this topic so I think I will do a lot better. I have a few questions for you... well anyone for that matter, my professor told us that we could write about whatever we wanted for our second paper, but that diseases are harder to write about as they are more informative than picking one aspect of it. I told her that I wanted to do my paper on CF and she told me to pick one specific part of CF and write about that.. I chose how it affects a family... can you think of any other aspects that would be as fun/interesting to write about? And also, you said you have already written a few papers on how it personally affected you. If you have them saved to your computer could you e-mail them to me? I'd like to read them (or even just one of them) and if it is anything I can use in my paper I will deffinately cite you and give you credit, and maybe use a direct quote from you for my paper. If you are uncomfortable with that, i completely understand, but then maybe you can just give me a direct qute not out of your paper, which will be cited and credit given to you either way.

For everyone else... a few more questions.. (sorry if you're getting sick of them) Do you think it is easier having everyone know that you have CF, or just a select few? This is mostly for when you were in school, or you were younger... was it easier for you to just have the faculty know, or all of your classmates as well? And for parents that have kids with CF... did you tell them and do they tell the class or how does that work?

Thank you all again soo much!!
Again, my e-mail is branja11@baycollege.edu
*Julie

 

[Emily65Roses]

I was a CF poster child for several years when I was younger. So pretty much everyone knew. The class I graduated CHS with, they all pretty much knew I was the girl with CF. Those that knew me better, knew me for who I was. Those that didn't, probably just knew me as the sick girl. But I didn't know them, so I didn't care. I find it much easier being open about it. When I meet new people, until they learn about it, I feel awkward, like I'm hiding something or keeping a secret or not really being myself. Only after people know that I have CF do I really start to get comfortable. Besides, if people know, I don't have to bother making excuses for why I can't go out, or why I need to take these meds or those meds. My friends and Mike can comfort me when something is going wrong. I don't need to suffer through hospitalizations and IVs all alone. I can have support there. I don't do nearly as well without support. Granted, Mike probably would've known if I was open about it or not, but... He knew from the very beginning. And his best friend Jay knows. Mike's parents and whole extended family know. I could go on and on. Basically anyone that knows me at all knows about the CF. Maybe it's just because I grew up as a poster child, but I personally have always preferred it that way. <img src="i/expressions/rose.gif" border="0">

 

[writewoman]

There is much to be said about caring for a child with CF, but the most important is that whatever "sacrifices" and adjustments must be made, it is an honor and a privilege. I remember hearing the song "You Are My Sunshine" but after HollyCatheryn, who posted earlier, was born I understood the meaning. It seemed that, for me, the sun didn't come up until Holly awakened.

Living with CF changed our lives profoundly. Someone once told me that parents of children with a life-threatening illness, and eventually the siblings, once they're old enough to understand, live with a chronic grief. When our child/ren's health is good, that grief moves to the back of our minds, but illness or any changes, like the news that pseudomonas has taken up permanent residence in the lungs or that the PFT numbers are down, bring that grief to the forefront. Perhaps I should speak only for myself, but any time I received information like that, the grief I experienced when she was diagnosed came rushing forward all over again.

But the joy that living with Holly brought to my life was so worth any pain or inconvenience that it wasn't worthy of comparison. She was/is so precious that I felt privileged to be a part of her life and whatever it took to help keep her healthy and give her the best chance of living her dreams was also in my best interest--keeping this precious person in the best health possible. There were no "sacrifices," only changes that were necessary to accomplish what I wanted more than anything--a good life for my daughter.

There are many specifics I can share with you if you want. But this is what first came to my mind and what was important for me to say first. I would do it all again for the privilege, the joy, of Holly.

 

[anonymous]

Hi Julie,

When is your paper due? I'm out of town right now, but would be happy to answer any questions you have via email (bono40@aol.com). You are more than welcome to use any of our information, quotes, stories etc. I'll be back in town and have access to my papers by Tuesday. If you need info before then, just email me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[HollyCatheryn]

I, too, was a poster child when I was little. That sort of set the tone. When I was in school, there were several years where I'd do a presentation at the beginning of the year to tell everyone about CF and let them ask their questions and then be done with it. It was always easier for me for people to know and me to be able to give them accurate information than for them to go home and get misinformed or start talking amongst themselves. I don't think there's ever been a time in my life where I kept CF a secret. It was different at different stages, but one time I remember that my mom (writewoman) came to class with me one day when we had planned a show-and-tell session. She brought my compressor and nebulizer, my pills and whatever else. We talked about what CF is and does, and I showed them what each medication is for and how I take it. We talked about hospital stays and IVs and my snacking and taking gatorade to PE, whatever pertained. Another time when I was older and on IVs, I did a little show-and-tell session about the IVs, partly to make people aware so they'd be careful about catching on the tubing ot bumping my IV site. A lot of them had already heard the other CF talks, so this was more of a refresher. I never didn't have CF - as far as I was concerned, I've always known, so it was never a big ugly secret or the elephant in the middle of the room.

 

[Julo]

Hi again everyone! Thanks again for all the responses. Just some more questions.. what exactly is a poster child? I think two people now have said that they were poster children and i don't really understand. Also, what does everyone do for fun? Obviously you can't be in places that are smoke filled, so that eliminated bowling alleys... etc. What sorts of things do you do that are fun for you?

Writewoman, what is pseudomonas? You said something about that in your post and i'm not sure what it is.

I'm sure i'll have more questions..
Thanks everyone!
*Julie

 

[anonymous]

Julie,

Poster child pretty much means that you were "put out there" as someone with CF. Example being in the early 80's my husband (who was also a CF poster child) did some commercials with Mike Regan (ronald regan's son) about CF, he also did commercials with the Seattle Mariners (baseball) about CF, enlisting support and fundraising for research. There were pictures of him that were taken and used for CF fundraising, pamphlets... Emily and others that reference this, have probably had the same commercial/photo/public appearances as I listed above.

Everybody is going to do different things for fun-to each his own, so I'll just share a few of the things we do. When my husband was younger (until he was about19) he played soccer almost everyday afterschool. Now, we go bowling (some places in CA have no smoking policies), even though we are over 21 sometimes we go dancing at underage clubs because most of them don't allow cigaretts, we go horseback riding, we go to the gym 3-4 times a week and we usually does weights (stays away from too much cardio because it makes him loose too much weight) together. We also walk our dogs everyother day and will occassionally turn it into a jog, but not too often. We have found a bar that has banned smoking so we go there and play pool on the weekends. We also go to movies, go shopping at the mall. We live about 15 minutes away from a lot of beaches in CA so we will take walks on the waterfront and go down the the piers and just walk around and investigate. Sometimes when the weekend comes around though we just stay home, watch movies, do homework and relax.

Pseudomonas is a type of bacteria that grows in a CFers lungs. Not all CFers grow Psuedmonas (sue-da-mona-s), but most will contract it at one point or another in their lives. And once you get it, you always have it but it can be treated withe nebulized antibiotics. It will clear up for a while and then come back (sometimes a few weeks later, sometiems 6 months or a year later). Someone who doesn't have CF will not be affected like a CFer. It is still possible for someone without CF to contract Psuedomonas but our bodies will immediately create antibodies to attack and kill it, and the probability of it affecting a non CFer again is very unlikely because of the antibodies that our bodies build that a CFers body doesn't.

Hope this helps, It's nice to see you are really doing you research and I enjoy answering questions like yours.

Julie (wife to Mark 24 w/CF)

 

[Emily65Roses]

Julie is right. As a poster child, I was on pamphlets and posters. I met the Hartford Whalers (when they still existed as a hockey team). I met the governer and some news people. They used me at fund-raisers to cut the red ribbon to start the walk-a-thon and stuff like that. Basically they like to put a face on CF to make it more personal. If they see a cute little girl (I was cute when I was little!! <img src="i/expressions/face-icon-small-wink.gif" border="0">), they can put a face to CF instead of just knowing that it's a disease. I imagine it gets people to donate more often and more generously.

Stuff I do for fun. Well, when I'm in Boston at school, I don't do much, really. I go to class in the mornings, nap in the afternoons and then work on homework and other such fun garbage. When I'm home is really when I have any kind of social life. My boyfriend and the friends I have are back at home in Connecticut. I'm with Mike a lot of the time. We hang around, go out to eat, watch movies (he's a budding film student --haha). Late night sometimes we'll go the 24-hour Walmart nearby (nothing much to do in our tiny town... 24-hour Walmart is one of the best things we've got). We also go out to the movies sometimes. Occasionally in big snowstorms, we'll dress up and go out for a walk in the snow. I love doing that. I also just started (quite literally, I think, a week ago) playing piano. I went out and bought a new keyboard last week, and I'm playing with children's songs and the lessons built into my keyboard. I also do lots of ASL stuff. I go to Deaf events, practice my ASL, socialize, stuff like that. And always sleep. Always always sleep. I love sleep. lol

 

[anonymous]

Hi my name is Jamie and I have a son w/cf , I trying to find different things to look for like a chat line or e-mail group or something like that. Anything to help me meet people to learn more about CF. If anyone could please e-mail any info. JDCAARON@AOL.COM . I would like to talk with any one who has cf or know about cf. thank you

 

[HollyCatheryn]

Well, Julie and Emily answered the poster child and pseudomonas questions pretty well. So I'll just answer what I like to do for fun. Honestly, I like to read and write. I had a lot of fun working on the website. I always end up doing teaching stuff in my spare time. I don't try to. That's just one of the things I'm best at and love the most. I used to go swing dancing a lot, when I was in college. I did the club thing some, but not lots and I had fun doing karioke (sp?). Now, that I'm married and a mom (and much of our time is taken up with grad school and just keeping life running) going for liesurely walks is fun. I still like to swim (I almost forgot because it's been cold for so long!). I like to play music for myself and to sing - real songs and made up ones. Going on dates with John are nice, but most of our precious free time we want to spend as a family. We did have dinner out the other night and that was really a treat. I'd almost forgotten how to have a 2-way conversation. We've always liked to just get in the car and drive. Go try streets we've never driven or drive around in the country. Going to playgrounds/parks are nice in the warmer weather - that was where John and I spent many evenings when we were dating. We used to play pool a lot, but the smoke was always a problem.

 

[anonymous]

Tapestry, this is nother one you might want to check out for quetions about what CF tends to effect in older people with CF.

Julie

 

[HisGraceUponHer]

My daughter was newly diagnosed.<img src="i/expressions/brokenheart.gif" border="0"> Pretty scary situation. Not only am I only 18 years of age, i have a daughter who is almost 3 months old, and am a single mother, but my daughter was just dagnosed with this life-threatening illness, she is so precious and is the light of my world. Iam still in high school, and am graduating next month. I work almost fulltime as well, at a daycare. My daughter attends the daycare fulltime with me, and im worried about her being there, being exposed and all.BUT- i cant afford to stay home with her. Iam basically living off the state. I have every type of benifit offered, food stamps,WIC,medicaid, you name it i got it. Most of the money i make goes towards the daycare bill, because they wont cut me a deal.
I dont mean this to sound like a whiny sob story aobut how horrible my life is, but i didnt know whereelse to turn to, other than the forum. I really am worried. Worried about Gracie(my daughter) most of all, myself, our money situation, and worried that i will have to be on welfare for the rest of my life, which is the last thing i want.

PLEASE IF ANYONE OUT THERE CAN HELP ME OUT IN ANYWAY, IT WOULD BE SO AWESOME!!!
SUPPORT, E-MAILS, ANYHTING. IM PRETTY ALONE AND SCARED.
THANK YOU MUCH.

 

[anonymous]

Alicia, try the milian(I dont know how exactly you spell that) foundation. Their donations help people in need. Also try the cystic fibrosis foundation CFF.org they may be able to help you or point you in the right direction. I was a VERY young mother also, alot younger then you even when I had my first child so I know it is hard... you will make it though, you will always find a way! That little girl will keep you going. If I have one thing to say it would be keep her health and her meds, pd"s ect. at the top of the priority list. That will be what keeps that little girl healthy. Just because she has CF does not mean that she will die soon because of it. More then likely when she grows up their will be a lot more treatments for her to help her live a normal and lengthy life. She will already have a normal life thanks to the meds they have out now. There are many older people on this board and I myself have a family member with CF who is almost 40 and they had little ideas on haw to treat CF or what it was even back when she was little. Thank goodness for advancements, right? One more thing, I know it is so hard at first but it will get easier I promise. I have twin babies that are 6 months and at first I was so wore out not knowing what to do and them dieing was all I could think about and scrubbing the whole house all the time, never taking them out, GERMS, ect... but as they get older and I calmed down it has gotten a little bit easier.




Good luck!!

 

[anonymous]

Alicia, I wish I could be of help to you $$$ wise, I wish I could for everyone. Try these foundations, we got great assistance from the milan foundation, and the REach for the stars turned us down (I don't know why yet) but they can probably help you.

<a target=new class=ftalternatingbarlinklarge href="http://www.milanfoundation.org/
">http://www.milanfoundation.org/
</a>
<a target=new class=ftalternatingbarlinklarge href="http://lungsforlife.org/">http://lungsforlife.org/</a> ASSISTANCE HERE IS ONLY THROUGH A SOCIAL WORKER

<a target=new class=ftalternatingbarlinklarge href="http://www.r4stars.org/
">http://www.r4stars.org/
</a>
Also, I am not clear of the social Security insurance benefits for infants (I know some children recieve SSI payments-maybe one of them who have grown up will see this and ask their parents about it) but it might be worth it to look into.

Good luck,

Julie (wife to Mark 24 w/CF)

 

[HisGraceUponHer]

Thank you guys. I greatly appreciate it. Thats exactly what i needed for a quick uplift. i will definatly check out those website, and see what i can qualify for. Hope to talk to you soon about, anything.... i have questions about, or that you may have; even though i am fairly new to this. God Bless.

 

[anonymous]

As for the marriage question: My son was 3 when he was diagnosed, and I was 6 months pregnant with our second child who was later determined to NOT have cf. I can see why parents would have trouble - it is an emotional and financial crisis. Our financial budget has gotten extremely tight, but we are making things work with my hubbies salary. Fortunately, that is not a huge issue for us although it gets frustrating to spend $600/month in healthcare. For parents who were on a tight budget prior to diagnosis, I can see why they would succumb to the pressures. It's not something any parent is prepared for. The other area to get parents is the emotional stress - fortunately we have not had to endure too much additional emotional stress (aside from the original diagnosis). Our son is in good health, and we have yet (knock on wood) to have a health crisis. So we have still been able to enjoy parenting our beautiful children. There is a lot of happiness in our home, and I think our marriage is prepared to ride through the storms. Before the diagnosis, we would occasionally fight about stupid things but now we "don't sweat the small stuff" as much. There are some things that irritate me (and my husband) with each other, but that's true in any marriage and not worth going to divorce court over. Those irritations include: When my husband goes to bed at night under the assumption that I will handle our son's treatment. Or when he DOES give the treatment he cleans the equipment but NEVER sterilizes it (I guess that's my job <img src="i/expressions/face-icon-small-smile.gif" border="0"> ). I don't think my husband even knows how to mix the bleach solution to sterilize the equipment - of course I keep a batch made on hand, but when it get's empty, he never refills it. Or when he gets irritated with me because I skipped one of our son's treatments that day, but then on the weekend when he's watching the kids he decides it's ok to miss the treatment. Blah Blah Blah - it's all so petty and not worth more than a 20 second bickering session. Then we forget about it and move on.

 

[WinAce]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>What makes me keep going. That's a tough one, because it's not going to be the same for everyone else. One big thing that keeps me going when I feel most like just lying in bed and saying "SCREW IT!!" is my boyfriend Mike...<hr></blockquote>

Love really does make the world go round. I was just about at the "screw it entirely" stage before I found mine.

 

[Emily65Roses]

<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/heart.gif" border="0">