This is my first time posting, so please excuse the topic if it's been discussed before. First thanks so much to other cystics who have been posting. It's nice to hear about a sense of 'been there, done that.' I'm curious to know if and what kind of barriers others have put up, and how you end up dealing with it. I guess another question, what is your outlook on life? As for me, I'm a 27yr old Cf'er who's been pretty healthy, graduated college, and work full time. Part of me is astonished I've lived this long and sometimes i wonder how long I'm going to live, but try not to fixate too much on that. So therefore i never really make long term plans. As someone else mentioned re:barriers. I've put mine in place so no one really knows what i'm feeling, and that i dont feel like I'm bothering them with my issues. Feelings that i dont want to be a burden, and/or i'll just deal with this on my own. In speaking to docs and other patients I know depression can be pretty prevalant among cf patients. I guess overall I'm just wondering if other cystics have faced battles regarding 'the big picture.' ie: life expectancy, relationships, depression, even feelings of guilt about being sick. Guess you could say i'm questioning alot right now and would like to know if others have 'been there, done that.' Thanks for listening.Beth 27yr old Cfer.
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good and bad barriers
- Thread starter anonymous
- Start date
BethMy situation is similar to yours, I am 29 and have stayed pretty healthy. I have never had to be admitted in the hospital because of CF. As far as planning a long term future that is pretty dificult. I am getting married this summer and of course my fiance wants to have a kid. I am very concerned about having one because I do not want to pass this on to my kids, and I don't want to leave her a single mother either. We do not know yet if she is carrier or not we will find out in a couple of weeks, if she is then kids will be out of the question. She does not want to try invitro and I don't like the adoption idea. On the other hand I invest money every month into; if you can believe this, a retirement fund. This money will be used for when I am no longer able to work anymore or it will be left to the wife when I am gone.Dave 29 w/cf
AbsintheSorrow
New member
Just a little PS to Dave... I plan on getting married and having kids (assuming my husband is not a carrier... and even if he is, we will have kids some how -- adoption, perhaps).. and I've been in the hospital on and off for tune ups since I was 16 (also pretty late). You weren't diagnosed until you were what... 22? And you've never been admitted due to your CF... I'd say, especially in your position, to live it up and do what you want. Don't be unreasonable of course, but you're doing pretty damn well. You'll probably outlive most of the rest of us, so I would just say not to let stuff mentally get in your way, because physically so far it hasn't. <img src="i/expressions/rose.gif" border="0">
Hi,I'm 30 with CF...31 in July. I have been married now for 8 yrs...and have a beautiful daughter who is 6. I want to say dont let anything get in the way of doing what you want to do. I have been overall healthy...for a CFer....even being diagnosed just a few weeks after birth. Sure it affects my every day living...but I dont let it "get in the way". I have been in the situation as well...and even being a mom now...have those days where I wonder what if I'm not around. Its hard not to...living with the disease we have. I just take everything one step at a time....and keep a positive outlook on my life. I am thankful for every day I have. Enjoy! Take Care!Dea
Hi,I'm Kay, 29 yr/wo CF. I am Dea's sister. I will agree with her 100%. Even though I have not lived with CF physically myself, Dea and my younger brother Kyle both have it, I still feel like it is part of my life and it really is. Dea has a BEAUTIFUL daughter and yeah, it's scary to think that she may not see her grow up, but she has a great daddy that I know is thankful every day that he has her. I am very thankful for my niece. If anything should happen to Dea, I know part of her will live on through Bailey Paige. I thank God everyday for both my siblings.Don't let the what if's get you into a place where you really don't want to be. Thank God you are healthy. Think about the future, don't be scared. God will take care of all things. I look at life this way, God only gives you what he knows you can handle and nothing more.SincerelyKay29yrs/wo CFSister & brother w/cf
Beth,I think all of us can relate to you in many of the areas you mentioned. I, too have barriers up. I don't tell just everyone that I have CF, just my very close friends. First of all, it just doesn't happen to come up in every conversation, so I don't bring it up either.I, too as a youngster, never made plans for "retirement" just assuming I wouldn't be here to worry about it. The median age for CF just keeps climbing up, so that may be something a few CFers should plan for=)I have a close friend that I can talk to & am very close to my mom too, so it's nice to have those 2 to talk to about my feelings of anxiety, depression & the future that sometimes come up. My thing is, I do try to be realistic w/o dwelling on the future & getting all bent out of shape about it. I know that my worrying is not going to add a single day to my life, & that God has His perfect plan for me & my worrying is not going to change that. If I ever get to the place where I can't shake it off & really feel like I'm getting depressed, etc, then I will get help. You're right, depression can be a reality for CFers, I just try to be positive & take it a day at a time like someone else mentioned. This is a great place to come to if you need encouragement, a shoulder to cry on, etc. Like you said, we've "been there, done that"...<img src="i/expressions/face-icon-small-wink.gif" border="0">
I never enrolled in my company's 401K (I'm on disability now so I don't have one available any longer) because I figured the chances of me being around at 65 or 70 to withdraw would be slim. I have always been bad at saving money too because it never made sense to me to work hard to save money if I wasn't going to be around to enjoy it.Well - I have just recently realized how silly this is. Basically - by not planning for my future, I am telling my body - "I'm not planning on being prepared to take care of you when you're old so go ahead and start the countdown because I'm planning to die young." By this I mean - I am pretty much telling my body I don't expect it to live a long life, so why the heck should my body plan on it.Even though I hope to live another 50 years or more, I have not lived like I really truly believed that.So if I start saving money, open up a retirement account, etc. - it's like telling my body - hey I think you will be around for another several decades. It's like any goal - if you want to learn to play the piano, you buy a piano, get an intstructor, get some music, and practice. But it you sit there saying - I want to play the piano - but don't take any steps to actually learn how to do it - then you never will. The same holds true for the way you think about your future. If you don't set any future goals - then you don't really have a future. Piper
I have been thinking about posting for a couple of days now and I think this is the right time. My husband (33 w/ CF) has been very sick the last year. Before last year he played sports and entered the hospital once every 2 years. For the past year we have been in every three months and he now uses O2 around the clock. We are also applying for disability, he had always worked full- time. Basically the Doctors have been telling us over and over again we should be prepard for the worst. They say it's ok to be positive but we have to be realistic. (Since day one of our marriage we have covered issues such as life insurance, living wills, both of our health wishes) Because my husband isn't very talkatvie and dosen't feel comfortable with the social worker, they feel we are not addressing the realities of the disease. We know the realities, he has lived with this every day of life. We know he is sick, our entire life changed within a year. However,how can you give up ? I believe in staying strong and positive, as no one has all the answers. Thinking about the possibility of dying makes you ill and takes a toll on the body. Not to mention the fact it's a waste of the time you do have.My mother- in law has been told 4 times in the last 33 years your son is dying. Or you son will never go to school, college, marry, he has beat the odds again and again .I know his time may come, but we believe in staying strong and enjoying every day. I refuse to spend the time I have been given with him being sad and depressed. If we had been neagative people we wouldn't have gotten married because there were so many what ifs. We have been married now for 6 wonderful years.
HollyCatheryn
New member
Wow! There's some real wisdom here! Of course, why should I be surprised? I think we are all a little different and CF is very personal. I have found it easiest to be pretty upfront with people. I do not like being ignorant and so feel it only fair to offer other people the chance to be informed. If it comes up, like seeing me take pills or commenting on a persistent cough or seeing my vest at home, etc. I will tell people I have CF. Some ask for clarification, others do not. I try to tell them as straight as I can, what they want to know. It comes from having been a poster child and having a mother who wrote leaflets about CF. I learned that information was the best defense. I've been hurt by ignorance when people assumed I was just like Alex (from the book and movie about a very sick girl with CF who died at 11). But, covering it up was never the answer, for me. Again that is personal. I've struggled with depression and pessimism at times when my health was out of control and I was losing friends to the disease or relationships were going sour because they couldn't handle the stress of the realities of CF. But, again for me information was everything. Getting out there and finding out the truth. Finding that there were lots of people with CF enjoying marriage, many women having children, adults having interesting and rewarding careers. Some of us who have had to exit the workforce have found hope and meaning in volunteer work, some within the CF community some not. You have to hope and dream and plan, but you also have to be flexible. I read a compilation os essays by a writer with CF in a book called <U>Lisa, the Brief Life of a Writer.</U> One thing that impressed me was that she had a goal of finishing college. It took her 15 years and a number of different ways to do it, but she did and died a couple months later. But, she lived the whole time. There's another great publication out that I take hope and encouragement in and that is the CF Roundtable. It is a newsletter for and by adults with CF. It brings such a wonderful view of the rainbow of possiblities out there. I am enjoying my 5th year of marriage and my daughter just turned 2. I teach violin lessons out of my home and am a seamstress on the side. I hope to go back to school someday to earn a certificate for midwifery. Right now I am helping to put my husband through school for his doctoral degree. Our path, my path has been meandering to say the least. But, we are getting somewhere. I, too, hate to feel a burden. But, I have found just a couple friends who will honor me with sharing their burdens and with whom I can share mine in return. Piper was so wise in her post. I have a friend who is 17 years post liver transplant. If he would respect himself enough to really invest in his life, he would be living fully. But, he is so sure that his body will fail him that he doesn't take his meds or care for his condition. And so, he is less healthy and living less fully that he could have been. He's wasted so much time because he thought he wouldn't be here for it. Just a thought in conclusion: George Washington Carver, a black entrepraneur from the 1800's said this and it's been my motto since I was 12, "It is not how long you live, but what you do while you live."HollyCatheryn