Wanting to Work with CF families and people

[anonymous]

Hi, I have cf I am 23yrs old and trying to figure out what i should do with my life I have always wanted to be a nurse and work with CF children, and try to make the best for them when they where in the hospital, but I don't have time for all that school, nor the money. I know my calling in life is somthing to do with CF. I want to work with CF families and kids exspecially. I was thinking maybe trying to open a center in or by the hospital for when they are in the hospital they can go there for a couple of hrs, to get out of there rooms, but don't have any idea on how to get that started. I don't know what to do, does anyone have any suggestion on things to do with CF. I was also thing respitory therpist, and then that way I could always be up to date on the new things, plus still play with the kids and help them. ANY thought at all please reply or email me at Missmary083@aol.com thanks

mary 23 w/cf

 

[anonymous]

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I thought you had already asked this and was working on getting something together to send to schools. Is there anything more specific you need to know?

 

[anonymous]

First off you need to slow down on the atitude, I reposted this here incase someone doesn't read the post on the adult forum. Secondly, I want to see if anybody else has problems that i could make key points on that could help educate people about CF. Why don't you mind your own business and don't worry about what I am doing, and worry about yourself or are you one of those people that has to be in everybody else business. Some of the people on here are about the LEAST supportive people I have come across. If you already posted a reply on the other page then why do you care, shut up and go on to the post but i bet you have sad negitive things on those ones to. huh? get alife

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

First off you need to slow down on the atitude, I reposted this here incase someone doesn't read the post on the adult forum. Secondly, I want to see if anybody else has problems that i could make key points on that could help educate people about CF. Why don't you mind your own business and don't worry about what I am doing, and worry about yourself or are you one of those people that has to be in everybody else business. Some of the people on here are about the LEAST supportive people I have come across. If you already posted a reply on the other page then why do you care, shut up and go on to the post but i bet you have sad negitive things on those ones to. huh? get alife</end quote></div>

I actually thought the same thing - that you had already posted this and got some good feedback. I'm not trying to be rude either, and I don't think anon was either. Why would you tell anon to mind his/her own business and not worry abut what you're doing, when you ASKED us for feedback?

To answer your question - if you have CF, you will not be able to work with CFers directly due to cross contamination. Have you thought about doing stuff indirectly, like working for the CF organization in your area? Even if it is volunteer work?

 

[anonymous]

I understand their point that I did post it before and did get great feedback, I was seeing if there are any more personal experiences that people would want me to reflect on that maybe didn't see that post in the adult forum. I can't just use one person story, and I told that person to mind there own business because if she/he already reply then she shouldn't be worried about it, i have her/his feedback and will use it to the best I can. I wanted to see if other people have ideas, or advice. Alot of people have alot different issuses. And she/he sounded rude and I didn't like <div class="FTQUOTE"><begin quote>Is there anything more specific you need to know? </end quote></div> the way that was put and then putting in the link to my other post, um hello I know its there i put it there, that was just plan stupid.

 

[anonymous]

No I wasn't trying to be rude. I really thought that you had found a project to work on and wanted to come back here for more specific input on that project. And if that was the case you might get better answers if you were more specfic.

Since that doesn't seem to be the case simply replying that the other project fell through and you needed to start from scratch would have been suffecient. You didn't need to be so rude about it. Maybe your the one posting negative stuff on the other thread.

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Is there anything more specific you need to know?</end quote></div>

I actually thought this sentence was sincere - but what do I know?<img src="i/expressions/face-icon-small-tongue.gif" border="0">

I hope you get the answers you're looking for. Sorry I'm of no real help to your situation.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

The link was added so other people could see what was posted so they knew what information had been given so they wouln't have to repeat info you already knew.

No good deed goes unpunished....I really need to remember that.

 

[anonymous]

nope sorry, i don't post reply on other peoples threads due to fact people are rude. I only post reply when i make a thread. But I already have some information started but I can't send it anywhere because nobody has sent me their school names and address. I can only send them to schools in my area. I want the packets to go to as many schools as possible and starting at the school where CF's attend, but again I have no information. Just forget i ask for help and I will rely on phone books and internet and just start sending to random schools.
Thank for all the great replies and help

 

[JRPandTJP]

Back to the topic...you may want to research art therapy, equine therapy, or even music therapy. Perhaps broaden your scope to be more focused on children with special needs as opposed to the more narrow focus of CF. This might help lead you to your path in life since it sounds like your desire comes from wanting to help children. Knowing the challenges as someone who has faced them yourself can offer such a wonderful perspective and connection to families in challenging situations, while helping them celebrate life as well.

You might try volunteering with a few organizations first to see what speaks to you and then ask the instructors what the path of education/certification are. I volunteer at a horse therapy center near us and it is so rewarding. The children are uniquely challenged in many different ways, yet they all shine on the horse. Because I have a child with CF I feel I can look past things more readily and really see the child I work with. I also connect with the parent because I understand medical routines, hospital stays, traumatice starts in life, grieving, ect.

I also know a guy who is music therapist who holds drum circles for children...this could easily be adapted to a hospital setting. Art therapy is also a great and portable career which offers much potential in helping people, especially children.


Hope this sparks some ideas. Jody

PS I think cross constamination would be a concern from the perspective of a parent at least. There are probably programs and such you could develop where face to face isn't required but it doesn't sound like that's what you are after.

 

[damiensmom]

C

 

[damiensmom]

oops Anyway I thought of cross contamination also first thought. I think maybe a mentor program c.f.ers being a mentor I think some have so much to offer . A program to help educate parents. so much to learn. Just thoughts.Good Luck