Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 New to CF Group. Hi I'm Natalia and I am 24 with CF. I was diagnosed when I was really little, A couple years old. I did well throughout high school and okay throughout University, but those 5 years of school really worn me down. High school is bearable compared to University, where there is not enough time to do all the school stuff, let alone CF stuff. So I graduated this past May and came crashing down since then. one flare up after the other. Never really bouncing back from each previous one. Now I am on IV treatment for a month at home. I live alone and it still works out really well. The nurse comes every morning to change the bag, though I am learning how now, so in a few days I will do it by myself. They will only come every 4-5 days to change the line. So it gives me a sense of independence. I am having it out on Christmas day. I was on the same treatment in June, but only for 10 days and really it did very little for me. So who knows what this will do. I also started to take steroids, first time for that, and already it has helped with my appetite a lot. I have lost 16lbs during the summer, and seem to be losing more daily. So I hope this helps. About non-CF stuff. I went to University for architecture, but soon realized that I cannot practice within that field. I get too sick too often. So I started my own business designing hand-bags and jewelry, and it has been going well. Kinda exciting, considering I thought that I would never be self-sufficient. Which is as painful of a realization as CF taking over your body. I don't know which is worse. I would like to meet some of you, especially those young adults out there with CF. Dealing with the uncertainly of their future. Plus I can give advise to those of you that have little ones. I want to share experiences and help you any way, since I dealt with all of it. Plus I was a fairly active kid and teenager, never allowing anything to stop me. And I have some strong view points about exercise and CF, as well as life choices with respect to Educations and career choices. I love to share, and hope to learn from you, as well as share my own life struggle with CF. It's a hard thing, and all those on this list who deal with it, by either being parents, siblings, friends, or are carriers themselves, you are strong people. Natalia ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 WELCOME to this fine list. It is great to have more folks along. What a cleaver & creative idea to do handbags, you could do travel luggage also. ------------- I have a granddaughter who does jewelry ......Loves it & hopes to actual grow her business full scale CONGRATS!!! LOVE & HUGS, GRANDMOMBEV New to CF Group. Hi I'm Natalia and I am 24 with CF. I was diagnosed when I was really little, A couple years old. I did well throughout high school and okay throughout University, but those 5 years of school really worn me down. High school is bearable compared to University, where there is not enough time to do all the school stuff, let alone CF stuff. So I graduated this past May and came crashing down since then. one flare up after the other. Never really bouncing back from each previous one. Now I am on IV treatment for a month at home. I live alone and it still works out really well. The nurse comes every morning to change the bag, though I am learning how now, so in a few days I will do it by myself. They will only come every 4-5 days to change the line. So it gives me a sense of independence. I am having it out on Christmas day. I was on the same treatment in June, but only for 10 days and really it did very little for me. So who knows what this will do. I also started to take steroids, first time for that, and already it has helped with my appetite a lot. I have lost 16lbs during the summer, and seem to be losing more daily. So I hope this helps. About non-CF stuff. I went to University for architecture, but soon realized that I cannot practice within that field. I get too sick too often. So I started my own business designing hand-bags and jewelry, and it has been going well. Kinda exciting, considering I thought that I would never be self-sufficient. Which is as painful of a realization as CF taking over your body. I don't know which is worse. I would like to meet some of you, especially those young adults out there with CF. Dealing with the uncertainly of their future. Plus I can give advise to those of you that have little ones. I want to share experiences and help you any way, since I dealt with all of it. Plus I was a fairly active kid and teenager, never allowing anything to stop me. And I have some strong view points about exercise and CF, as well as life choices with respect to Educations and career choices. I love to share, and hope to learn from you, as well as share my own life struggle with CF. It's a hard thing, and all those on this list who deal with it, by either being parents, siblings, friends, or are carriers themselves, you are strong people. Natalia ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 Thanks for the welcome. I love how creative what I do allows me to be. > > WELCOME to this fine list. It is great to have more folks along. What > a > cleaver & creative idea to do handbags, you could do travel luggage > also. ------------- > I have a granddaughter who does jewelry ......Loves it & hopes to > actual > grow her business full scale > CONGRATS!!! > > LOVE & HUGS, GRANDMOMBEV > > New to CF Group. > > > Hi > I'm Natalia and I am 24 with CF. I was diagnosed when I was really > little, A couple years old. I did well throughout high school and okay > throughout University, but those 5 years of school really worn me down. > High school is bearable compared to University, where there is not > enough time to do all the school stuff, let alone CF stuff. So I > graduated this past May and came crashing down since then. one flare > up after the other. Never really bouncing back from each previous one. > Now I am on IV treatment for a month at home. I live alone and it > still works out really well. The nurse comes every morning to change > the bag, though I am learning how now, so in a few days I will do it by > myself. They will only come every 4-5 days to change the line. So it > gives me a sense of independence. I am having it out on Christmas > day. I was on the same treatment in June, but only for 10 days and > really it did very little for me. So who knows what this will do. I > also started to take steroids, first time for that, and already it has > helped with my appetite a lot. I have lost 16lbs during the summer, > and seem to be losing more daily. So I hope this helps. > About non-CF stuff. I went to University for architecture, but soon > realized that I cannot practice within that field. I get too sick too > often. So I started my own business designing hand-bags and jewelry, > and it has been going well. Kinda exciting, considering I thought that > I would never be self-sufficient. Which is as painful of a realization > as CF taking over your body. I don't know which is worse. > I would like to meet some of you, especially those young adults out > there with CF. Dealing with the uncertainly of their future. Plus I > can give advise to those of you that have little ones. I want to share > experiences and help you any way, since I dealt with all of it. Plus I > was a fairly active kid and teenager, never allowing anything to stop > me. And I have some strong view points about exercise and CF, as well > as life choices with respect to Educations and career choices. > I love to share, and hope to learn from you, as well as share my own > life struggle with CF. It's a hard thing, and all those on this list > who deal with it, by either being parents, siblings, friends, or are > carriers themselves, you are strong people. > > Natalia > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 Natalia, It is nice to meet you. I am glad that you joined this group. You will be able to help those of us without CF understand what our children and grandchildren deal with. I have a 23 month old grand daughter that has cf. She had a rough start, but is doing well now. Gale > Hi > I'm Natalia and I am 24 with CF. I was diagnosed when I was really > little, A couple years old. I did well throughout high school and okay > throughout University, but those 5 years of school really worn me down. > High school is bearable compared to University, where there is not > enough time to do all the school stuff, let alone CF stuff. So I > graduated this past May and came crashing down since then. one flare > up after the other. Never really bouncing back from each previous one. > Now I am on IV treatment for a month at home. I live alone and it > still works out really well. The nurse comes every morning to change > the bag, though I am learning how now, so in a few days I will do it by > myself. They will only come every 4-5 days to change the line. So it > gives me a sense of independence. I am having it out on Christmas > day. I was on the same treatment in June, but only for 10 days and > really it did very little for me. So who knows what this will do. I > also started to take steroids, first time for that, and already it has > helped with my appetite a lot. I have lost 16lbs during the summer, > and seem to be losing more daily. So I hope this helps. > About non-CF stuff. I went to University for architecture, but soon > realized that I cannot practice within that field. I get too sick too > often. So I started my own business designing hand-bags and jewelry, > and it has been going well. Kinda exciting, considering I thought that > I would never be self-sufficient. Which is as painful of a realization > as CF taking over your body. I don't know which is worse. > I would like to meet some of you, especially those young adults out > there with CF. Dealing with the uncertainly of their future. Plus I > can give advise to those of you that have little ones. I want to share > experiences and help you any way, since I dealt with all of it. Plus I > was a fairly active kid and teenager, never allowing anything to stop > me. And I have some strong view points about exercise and CF, as well > as life choices with respect to Educations and career choices. > I love to share, and hope to learn from you, as well as share my own > life struggle with CF. It's a hard thing, and all those on this list > who deal with it, by either being parents, siblings, friends, or are > carriers themselves, you are strong people. > > Natalia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 HI Natalia, I am pleased that you decided to share with us your experiences. My daughter is 10 and she was diagnosed last year. It is really nice to hear from someone who ccan give some insight on what we may be facing. Do you have a website where we can see the things you design? Perhaps they woudl make good holiday gifts! ALso, where do you live? Welcome!! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Thank you for your insight. I would love to hear your thoughts on all aspects of raising a child with CF. In particular I would like to know about school. I have a 4 year that will start kindergarten next year. mom of Carson (4yrs with CF) and Will (18 months without CF) > Hi > I'm Natalia and I am 24 with CF. I was diagnosed when I was really > little, A couple years old. I did well throughout high school and okay > throughout University, but those 5 years of school really worn me down. > High school is bearable compared to University, where there is not > enough time to do all the school stuff, let alone CF stuff. So I > graduated this past May and came crashing down since then. one flare > up after the other. Never really bouncing back from each previous one. > Now I am on IV treatment for a month at home. I live alone and it > still works out really well. The nurse comes every morning to change > the bag, though I am learning how now, so in a few days I will do it by > myself. They will only come every 4-5 days to change the line. So it > gives me a sense of independence. I am having it out on Christmas > day. I was on the same treatment in June, but only for 10 days and > really it did very little for me. So who knows what this will do. I > also started to take steroids, first time for that, and already it has > helped with my appetite a lot. I have lost 16lbs during the summer, > and seem to be losing more daily. So I hope this helps. > About non-CF stuff. I went to University for architecture, but soon > realized that I cannot practice within that field. I get too sick too > often. So I started my own business designing hand-bags and jewelry, > and it has been going well. Kinda exciting, considering I thought that > I would never be self-sufficient. Which is as painful of a realization > as CF taking over your body. I don't know which is worse. > I would like to meet some of you, especially those young adults out > there with CF. Dealing with the uncertainly of their future. Plus I > can give advise to those of you that have little ones. I want to share > experiences and help you any way, since I dealt with all of it. Plus I > was a fairly active kid and teenager, never allowing anything to stop > me. And I have some strong view points about exercise and CF, as well > as life choices with respect to Educations and career choices. > I love to share, and hope to learn from you, as well as share my own > life struggle with CF. It's a hard thing, and all those on this list > who deal with it, by either being parents, siblings, friends, or are > carriers themselves, you are strong people. > > Natalia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Hi Natalia Welcome and thanks for sharing your experiences! Congratulations on your Graduation and starting up your own business. I am copying your message to show to my daughter. Barbara Mum to Nicky 15wocf and Kristy 13 wcf Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of help for me. Right now it is the usual problem people have with their teens, getting her to do her treatments and vest and take her meds without my nagging. The problem is she gets annoyed with only me mentioning her treatments and its about time she did one. She does forget sometimes and sometimes just doesn't want to be bothered. She doesn't clean her nebs but somehow doesn't seem to get sick from it. Once in a while I gather them all up and clean them. I am sure this puts some of the parents of younger children in shock. When was younger I used to clean them everyday too. I would like to get her involved with one of these lists too but she is anti cf right now too, and she doesn't even want to hear about anything related to it. She goes to clinic since I make her and she takes her meds half the time about. I know because she doesn't run out of them every month like she should. I guess I have babbled on long enough. I guess I should mention she doesn't need enzymes so she doesn't have the stomach problems that she would have from skipping them if she needed them. Welcome again! love, M mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Welcome, likewise, to Natalia; my child wcf is all of 38+; we will not discuss my age, but I do have cf and two carrier adults! Welcome, aboard! Love, n Rojas, from California Re: New to CF Group. > Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of help for me. Right now it is the usual problem people have with their teens, getting her to do her treatments and vest and take her meds without my nagging. The problem is she gets annoyed with only me mentioning her treatments and its about time she did one. She does forget sometimes and sometimes just doesn't want to be bothered. She doesn't clean her nebs but somehow doesn't seem to get sick from it. Once in a while I gather them all up and clean them. I am sure this puts some of the parents of younger children in shock. When was younger I used to clean them everyday too. I would like to get her involved with one of these lists too but she is anti cf right now too, and she doesn't even want to hear about anything related to it. She goes to clinic since I make her and she takes her meds half the time about. I know because she doesn't run out of them every month like she should. I guess I have babbled on long enough. I guess I should mention she doesn't need enzymes so she doesn't have the stomach problems that she would have from skipping them if she needed them. > > Welcome again! > love, > M > mom of Nick age 21 nocf and age 19 wcf > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 --WELCOME to you & your family, We love to have others join & be part of this wonderful family!! If you would want some info/tapes/booklets that MIGHT help in these areas or just provide added suggestions/reasons. etc about you person with CF -----------I too have a 19+ yr. old with CF (granddaughter) ....I would be very happy to send to you. Just post back with your shipping address. Please send street address, not P.O. if you want tapes as well. I send out small box thru FEDEX 7 they wont deliver to PO's. Sooo best wishes & let me know LOVE & HUGS, GrandmomBEV > Welcome Natalia! I have a 19 year old wcf so I'm sure you will be lots of help for me. Right now it is the usual problem people have with their teens, getting her to do her treatments and vest and take her meds without my nagging. The problem is she gets annoyed with only me mentioning her treatments and its about time she did one. She does forget sometimes and sometimes just doesn't want to be bothered. She doesn't clean her nebs but somehow doesn't seem to get sick from it. Once in a while I gather them all up and clean them. I am sure this puts some of the parents of younger children in shock. When was younger I used to clean them everyday too. I would like to get her involved with one of these lists too but she is anti cf right now too, and she doesn't even want to hear about anything related to it. She goes to clinic since I make her and she takes her meds half the time about. I know because she doesn't run out of them every month like she should. I guess I have babbled on long enough. I guess I should mention she doesn't need enzymes so she doesn't have the stomach problems that she would have from skipping them if she needed them. > > Welcome again! > love, > M > mom of Nick age 21 nocf and age 19 wcf > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 n, Thanks for the welcome!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Thank you, but it IS spelled " n! " My mother did that to avoid my being referred to or called " Anne! " Did not work--just causes phone comp any types to refer to me as " Sir! " Love, and Welcome, anyway; it's a trivium! n Re: New to CF Group. > n, > Thanks for the welcome!! > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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