Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 I saw a few minutes of the show, I couldn't stomach any more than that. There were several mothers all dressed up with hair and makeup done talking about how hard it is to be a mother. Here I sit at 5:30 pm and still in my pajamas. My daughter with CF has pneumonia. I am thankful that we caught it early and am hoping she can kick it without being hospitalized. Cheyenne has been watching cartoons all day. I hate the fact that she does but I find it hard to play with her and keep her occupied when 6 hours of my day I spend breastfeeding Kennedy and giving her meds, CPT, etc. My family and friends live 4 1/2 hours away from me. I don't get a break from the kids-ever! Yeah.....Do you get the sense that I am a little stressed out and angry? I guess what I am trying to say is that we need to send those letters in pretty darn quick! Holly 24 (mother of Cheyenne, 4 1/2 years w/o CF and Kennedy, 8 months w/ CF) > >Reply-To: cfparents >To: cfparents > >Subject: Todays Oprah show >Date: Thu, 17 Oct 2002 17:22:19 -0400 > >Did anyone see the episode today? I heard it advertise and from what I >could tell it was the same subject that we were talking about and saying >she needs to do a show for moms with kids with severe illnesses. I wanted >to know if anyone saw it and if its time for us all to put our letters >together? > > Re: CF Awareness week > > > Hi Traci, > > whether to play the pity me card or not is subject of constant > discussion here in Germany too. I have spoken with our national CF > foundation about it, because I personally don't like the approach. > But I was assured that if you want to raise more money you have to go > the emotional route and save the people with sheer facts. > > Fortunately many of our kids are doing so well that we feel bad if we > play the pity-me card. But then if we wait until there is reason to > pity us it's too late :-(( So we have to be split minded. On the one > hand we need to be optimistic, because otherwise we would loose it > (at least I would). But on the other hand we have to admit that the > average life expectancy of pwcf is less than half of healthy people > and that is a pity and needs to be changed. > > Peace > Torsten > > > > I first want to say that this week has been very enlightening for > me. Where I work (in a college environment) I passed out over 60 > ribbons, and I have only done it to friends and professors that > helped me raise money in Great Strides walks in the past and I have > had a tremendous response. I only gave 2 ribbons to students that > work for me and they have sent at least 10 students to me with > information that they have siblings/cousins/or some form a relative > that has CF. We are tabling in the student center tomorrow and they > are helping me. I think that this is great. > > > > I have had one complaint for the information letter that I have > been passing out with my pins. I didn't put what I call " the death > factor " in my information. I feel with being 3 years old, I > don't want to dwell on that. Am I being stupid? That was what I was > called, well not in that word, really naive and denying the truth was > the way she put it to me. In my information I state website > addresses where they can go and find that information out for them > selves. I noticed the CFF wants us to put that in also. Isn't this > playing the " pity me " card? Please don't flame, I know that this can > be a sticky subject for some. > > > > Sorry for this being real long > > > > Thanks and everyone have a great rest of the week. > > > > Traci mom of 3 and only 1 w/cf > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Sorry your days has been terrible, I started a letter I will try and finish it and see what you all think. I wish I could have seen the show but I missed it. Re: CF Awareness week > > > Hi Traci, > > whether to play the pity me card or not is subject of constant > discussion here in Germany too. I have spoken with our national CF > foundation about it, because I personally don't like the approach. > But I was assured that if you want to raise more money you have to go > the emotional route and save the people with sheer facts. > > Fortunately many of our kids are doing so well that we feel bad if we > play the pity-me card. But then if we wait until there is reason to > pity us it's too late :-(( So we have to be split minded. On the one > hand we need to be optimistic, because otherwise we would loose it > (at least I would). But on the other hand we have to admit that the > average life expectancy of pwcf is less than half of healthy people > and that is a pity and needs to be changed. > > Peace > Torsten > > > > I first want to say that this week has been very enlightening for > me. Where I work (in a college environment) I passed out over 60 > ribbons, and I have only done it to friends and professors that > helped me raise money in Great Strides walks in the past and I have > had a tremendous response. I only gave 2 ribbons to students that > work for me and they have sent at least 10 students to me with > information that they have siblings/cousins/or some form a relative > that has CF. We are tabling in the student center tomorrow and they > are helping me. I think that this is great. > > > > I have had one complaint for the information letter that I have > been passing out with my pins. I didn't put what I call " the death > factor " in my information. I feel with being 3 years old, I > don't want to dwell on that. Am I being stupid? That was what I was > called, well not in that word, really naive and denying the truth was > the way she put it to me. In my information I state website > addresses where they can go and find that information out for them > selves. I noticed the CFF wants us to put that in also. Isn't this > playing the " pity me " card? Please don't flame, I know that this can > be a sticky subject for some. > > > > Sorry for this being real long > > > > Thanks and everyone have a great rest of the week. > > > > Traci mom of 3 and only 1 w/cf > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Sorry your days has been terrible, I started a letter I will try and finish it and see what you all think. I wish I could have seen the show but I missed it. Re: CF Awareness week > > > Hi Traci, > > whether to play the pity me card or not is subject of constant > discussion here in Germany too. I have spoken with our national CF > foundation about it, because I personally don't like the approach. > But I was assured that if you want to raise more money you have to go > the emotional route and save the people with sheer facts. > > Fortunately many of our kids are doing so well that we feel bad if we > play the pity-me card. But then if we wait until there is reason to > pity us it's too late :-(( So we have to be split minded. On the one > hand we need to be optimistic, because otherwise we would loose it > (at least I would). But on the other hand we have to admit that the > average life expectancy of pwcf is less than half of healthy people > and that is a pity and needs to be changed. > > Peace > Torsten > > > > I first want to say that this week has been very enlightening for > me. Where I work (in a college environment) I passed out over 60 > ribbons, and I have only done it to friends and professors that > helped me raise money in Great Strides walks in the past and I have > had a tremendous response. I only gave 2 ribbons to students that > work for me and they have sent at least 10 students to me with > information that they have siblings/cousins/or some form a relative > that has CF. We are tabling in the student center tomorrow and they > are helping me. I think that this is great. > > > > I have had one complaint for the information letter that I have > been passing out with my pins. I didn't put what I call " the death > factor " in my information. I feel with being 3 years old, I > don't want to dwell on that. Am I being stupid? That was what I was > called, well not in that word, really naive and denying the truth was > the way she put it to me. In my information I state website > addresses where they can go and find that information out for them > selves. I noticed the CFF wants us to put that in also. Isn't this > playing the " pity me " card? Please don't flame, I know that this can > be a sticky subject for some. > > > > Sorry for this being real long > > > > Thanks and everyone have a great rest of the week. > > > > Traci mom of 3 and only 1 w/cf > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Sorry your days has been terrible, I started a letter I will try and finish it and see what you all think. I wish I could have seen the show but I missed it. Re: CF Awareness week > > > Hi Traci, > > whether to play the pity me card or not is subject of constant > discussion here in Germany too. I have spoken with our national CF > foundation about it, because I personally don't like the approach. > But I was assured that if you want to raise more money you have to go > the emotional route and save the people with sheer facts. > > Fortunately many of our kids are doing so well that we feel bad if we > play the pity-me card. But then if we wait until there is reason to > pity us it's too late :-(( So we have to be split minded. On the one > hand we need to be optimistic, because otherwise we would loose it > (at least I would). But on the other hand we have to admit that the > average life expectancy of pwcf is less than half of healthy people > and that is a pity and needs to be changed. > > Peace > Torsten > > > > I first want to say that this week has been very enlightening for > me. Where I work (in a college environment) I passed out over 60 > ribbons, and I have only done it to friends and professors that > helped me raise money in Great Strides walks in the past and I have > had a tremendous response. I only gave 2 ribbons to students that > work for me and they have sent at least 10 students to me with > information that they have siblings/cousins/or some form a relative > that has CF. We are tabling in the student center tomorrow and they > are helping me. I think that this is great. > > > > I have had one complaint for the information letter that I have > been passing out with my pins. I didn't put what I call " the death > factor " in my information. I feel with being 3 years old, I > don't want to dwell on that. Am I being stupid? That was what I was > called, well not in that word, really naive and denying the truth was > the way she put it to me. In my information I state website > addresses where they can go and find that information out for them > selves. I noticed the CFF wants us to put that in also. Isn't this > playing the " pity me " card? Please don't flame, I know that this can > be a sticky subject for some. > > > > Sorry for this being real long > > > > Thanks and everyone have a great rest of the week. > > > > Traci mom of 3 and only 1 w/cf > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 Hi Holly and the rest of you who feel like this, I too feel like noone knows what exactly 'getting to school on time' means to me!! Or 'getting to bed at a reasonable hour' either! Fitting in those 1/2 hour vest sessions and meds are difficult. It is amazing I can remember it all, which pills to give him......if I gave him his vitamins.....if he did his inhaler etc. etc. My husband travels much of the time, and it is mostly my responsibility.....my choice as my husband says. I choose to stay home with my kids. I frankly can't imagine (like some of you no doubt) how hard it would be managing the mornings along with dressing for a career! It is hard enough managing dinner, while vest and nebs are being done, hollering over the television to turn the vest timer on for another 10 mins, changing the nebulizer at the right time so not to 'waste' time. Then my 3yo who turns off the television on his brother just to annoy him while he is doing the vest. It is just nuts around here at times. I felt like yelling at that Oprah show.......'wake up and smell the coffee girls!!' Be thankful for what you have. But then again, that is the most important lesson I have learned through this whole cf thing. Every time I want to scream that I can't do it anymore, I see someone with a problem worse than mine. When my son is healthy, things are great. Ofcourse we have the day to day battles of treatment, meds etc., but overall things are great. To me, doing 's therapy is like washing the dishes.....just a part of everyday life. But when he gets sick, the rug is pulled right out from under me. I get scared. Just wanted to drop a line about this subject. My friends all say, 'wow, Cheri, how do you do it?' but really they have no idea what they are even asking. Well, that is my two cents. Just feeling a little pitiful tonight. Cheri B., Mom to , 8yo invitro baby wcf, and Christian 3yo, adopted nocf, both my gifts from Heaven! ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Christy---Others will never get what we go through. How getting them to school is like accomplishing a marathon! The wonderful feeling you feel at actually making it to school ON TIME! To me that is a miracle - being on time for school. People give me looks or make comments when my kids are late....let them - if they only knew............... Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Christy---Others will never get what we go through. How getting them to school is like accomplishing a marathon! The wonderful feeling you feel at actually making it to school ON TIME! To me that is a miracle - being on time for school. People give me looks or make comments when my kids are late....let them - if they only knew............... Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Christy---Others will never get what we go through. How getting them to school is like accomplishing a marathon! The wonderful feeling you feel at actually making it to school ON TIME! To me that is a miracle - being on time for school. People give me looks or make comments when my kids are late....let them - if they only knew............... Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
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